Transcript for Podcast Episode: 113
Casey Was Worried About Autism... Here's What She Did
Hosted by: Dr. Mary Barbera

Mary: You're listening to the Turn Autism Around podcast episode number one hundred and thirteen. I'm your host, Dr. Mary Barbera. And today I have a parent, Casey, who is joining us to talk about her son's delays. He has not yet diagnosed. He is about to turn two years of age. Actually, by the time of this recording, he will be two. But she has spent the last several months worried, waiting and just really trying to put step by step process is in place. She has taken my toddler course and as well as she has reviewed the transcript of my new book tour, Autism Around. And we are going to talk about her son's early signs, how she was falsely reassured, talk about the waiting lists that she's entered. And she really has some good insights for parents of young children with signs of autism with or without a diagnosis. She also has some great insights for professionals who are working with families, how they can be more compassionate and trust the moms gut instincts a lot more. So let's get to this special interview with Casey.

Mary: Thanks for joining us today, Casey. I'm so excited to speak with you.

Casey: Thanks for having me, Mary.

Mary: Yeah, so we never met in person, and I know we have a mutual friend, so I wanted to have you on to talk about a child without a diagnosis yet. A toddler that's showing signs. And you're gracious enough to come on the show and talk to our listeners about this, how you're feeling at the moment. So before we start, describe how you fell into the autism world. I mean, you're not quite in it because you don't have a diagnosis for your son at this point. But when and how did you start thinking about autism?

Casey: So my son, Noah, he seemed to be developing pretty typically up until around, I would say, 15 or 16 months. He didn't have a lot of language, but he did say things like mama or he would point at a duck and say duck. And so he seemed like he was normal to me. And where I was at before, we didn't have him around a lot of kids his age. And I he's my only child. So I never had experience with other children. I've never really seen the progression or how kids typically develop. So everything looks fine to me. The big warning sign for me was that 16 months when it just seemed like he changed, like he just did a complete flip and he seemed more introverted. He didn't really seem to want me to be interacting with him as much. He got frustrated easier. He lost his words. He stopped imitating him. Before that, he would pick up a phone and pretend he was talking a babble into it. After that, he stopped so talking with friends and family and other people that had children, they said, Oh, well, he's a Covid kid. And it's like, I don't really know what that means, you know?

Casey: And basically they're saying he's not interacting with other children because of covid. He's probably just kind of developmentally behind in language and stuff because he's not spending time with other children. But like my mama was saying, no, this is different. Something's different with him. So I kind of started doing my own research on autism and what the first signs were. And I saw some red flags and I made an appointment with my pediatrician who quickly dismissed me and said, you know, this is way too early. He probably is just a slower developer. We don't even do evaluations at this time. Come back. I think she said his 18-month appointment, we'll talk again and we'll reevaluate.

Casey: So I came back at eighteen months and she still wouldn't refer us to a developmental pediatrician. Set us up with speech therapy. And that is very difficult with covid, with the mask over the face and everything. So, yeah, that didn't work too well. But anyways, that's basically how I came to start doing my own research and looking for my own resources. And like Mary mentioned, we have a mutual friend and she had definitely suggested that based on my concerns about Noah, that I get in touch with Mary and see what her autism courses could do more for Noah, and so that's how I came to be here. And then after that, she just basically pushing all on my own and trying to figure out things on my own because, yeah, it was pretty difficult to get support from my pediatrician.

Mary: Wow. And are you are you on any wait lists? I know the waiting lists for, like you said, Speech Therapy. Now you have the masks. And I do believe that covid, in fact, in my new book, Turn Autism Around, we have the story of Drew. He's in Chapter nine, which is the advanced talking chapter, and he happens to be a brother of one of my former clients. And he stayed home from day care for three months. And both his parents were working and they were just turning off whining and stuff by giving him an iPad for three months straight. And he did regress socially and language wise. And so I went over to evaluate him. And pretty much I thought it was a covid kind of regression. And he went back to his day care setting. And I just went back, got an email from his mom today and said that he was she got on a waiting list for speech therapy, but he was he was pretty much caught up at that point that going back to daycare really helped. But in your situation, are you currently on wait lists?

Casey: Yes. So since the initial appointment with my pediatrician at 16 months, I have made a move to a different state where they have different regulations. So I'm now in California where they don't they won't make a diagnosis of autism until 30 months. So no, really. Yes, I. Which I found out in your day in the whole state. I guess so. I am still doing a little bit more research on this. But I've been through the wringer just trying to get him simple services here and mostly just early intervention stuff. And in the process, I got in touch with a caseworker who said that developmental pediatricians here typically don't even see a suspected autism case until they're 30 months old.

Mary: Sounds really late for like a state wide kind of thing. I mean, yes, most kids don't get diagnosed until they're four or five, but that's the deal. But, you know, you can start to do an MCHAT at eighteen-month visit. You can get a diagnosis at 18 months if you go to the right place and you get there quickly. But yeah. So the wait lists are extremely frustrating.

Casey: Yeah. And just getting resources in place in general has seemed to be a struggle. I mean not just here but in Oregon where I lived previously, I had a hard time getting service, early intervention set up for no. So it's basically just, you know, figuring it out on your own too. There's not any, from what I found, any sort of step-by-step guide on what do you do if you think that your kid needs early intervention or how do you go about getting this stuff? So it's been it's that alone has delayed everything so much, just trying to figure out how to get services in place. So, yeah, I'll be going to see a pediatrician tomorrow, actually, to see for sure about getting a referral to a developmental pediatrician so that we can see about getting a diagnosis. But as far as I know right now, it's just it's not easy.

Mary: Yeah. So it doesn't sound like you were in denial at all. You saw some regression, which is a sign that one of the red flags is a regression in language or in skills. So he used to point and then he stopped pointing. He used to have some words. He stopped doing words. In Lucas's case, he regressed and he started being picky or eater. He stopped. Stop sleeping. He got more and more addicted to his pacifier. So I was the one in denial when my husband first mentioned it. But how about you other family members? Were they in denial or did they give you a hard time or give false reassurance like the pediatrician did?

Casey: Yeah, it was very difficult. I mean, up until recently, I would say within the last month, the only person who was in agreement with me that something was off was Noah's father. Other than that, grandparents, aunts, uncles, basically anyone who's been around. No, I was just assuming that he's just delayed, that he's just a late talker and. Without them having spent much significant time with him and really seeing what I was seeing, where I saw OK, he used to be able to eat with a spoon and now he doesn't or he used to imitate me. Now he does. He used to have words, have skills. Now they're gone. They just all they were saying is he doesn't have words yet, but he's only one and a half. He's not even two yet. And a lot of, well, my friend's daughter didn't start talking until they were three. And it's like, I understand that. But that's not the biggest concern. The biggest concern for me was seeing things lost. And it's different when you're not seeing gains, but when you're seeing things actively going away is when it really starts to hit you and yours. And it makes you very concerned. It's like, what can I do to stop the loss and to make sure that not only is he not losing more skills, but he's actually gaining skills and learning things that are typical for the development of his age.

Mary: Yeah. So this was back in the fall when you were we were connected through our mutual friend. And just at the time I finished the manuscript for Turn Autism Around, which will be published on March 30th. And right now I'm forming a book launch team for just a couple more weeks and all the information for preordering, getting the bonuses and joining our launch team are at TurnAutismAround.com But once the book is launched on March 30th, then, of course, the book launch team will be will be closed. And so some of those preorder bonuses will go away. So turn autism around. But Casey is one of the few people and I can't I don't even know if there's another person in your situation with it. With a child not diagnosed, you're worried about the child who was able to read the manuscript. So what kind of tips? And you also took the toddler online course. And so, like, what kind of tips of my providing in the book, as well as in the courses that have provided any guidance to you?

Casey: Well, I think the intro to your book that hit me the hardest, because I, I felt that you said it's an emergency and we're not treating it like it's an emergency. And that's how I felt as a mom who's seeing these things happen and no one else is feeling the same way. You know, it's like I'm seeing it and they're saying, oh, let's wait, let's push it off. And to have it recognize, like, this is something that we need to start right away. And the younger you start in, the more active you are, the better the results. And to have steps laid out there for someone who doesn't know what the heck they're doing, because, I mean, like anyone, I think that has been introduced to the autism world and we're expecting to be here. We don't we don't know what we're doing. You know, I don't think anyone expects to be here. And so to have a kind of a step by step, this is where to start, how to reduce tantrums and help with feeding problems and start to get that language going imitation and kind of build back those skills that your child may have lost or may have not even started to have yet is so helpful is I think it's in all all of my research and stuff I've done, just having that step by step. And I just guide to here's the beginning. Here's where to start. Here's how to get your child engaged was so extremely comforting and helpful to really get on track.

Mary: Yeah, were you able to see any gains in your son as you've implemented some of these strategies?

Casey: Yes, I have. No, he hasn't had any full words yet, but he is starting to try. So we he says after Apple and he's reaching for things. And we almost have a point, which is really exciting. He is really he really loves the shoe box. I mean, that in itself just he has a ball with that. Every time I get it out, it's just exciting. And he's starting to match on his own, which is incredible to see following simple directions as a little bit easier and responding to his name, which was I mean, I that was a scary one for me when we lost that ability. So to see him starting to respond when I call him from across the house is so huge.

Mary: Yeah. Yeah, good. So that's excellent. And pull all of these strategies are in both my new book as well as the toddler course, because basically I decided that I needed to get the word out from the toddler course because the toddler parents were having so much success with just intervening. And then I wanted to get the word out. And so I wrote my book. And I think the combination of the two, I think is really is really going to be powerful for people. But I'm really happy to hear that. And your son is going to be two soon or.?

Casey: Yeah, at the end of February, he turns two.

Mary: So this podcast is going to air early March, so he'll have just turned two. So you're getting things like some word approximations, some reaching. And we can in the show notes we'll put a video blog on how to teach pointing because that's something that is a hallmark sign of autism. And we can actually teach it. And I have a way to teach it. The pointing. I also have a method for teaching kids to respond to their name, which we can also link in the show notes with a video blog. And basically, the gist of responding to your name is the fact that in maybe you're like this case where when he stopped responding your name, his name, then people started using his name more so like, Noah, touch your head. Noah, come here. Noah, stop. Noah, give me your hand, Noah. Point to the duck.

Mary: And pairing his name with demands actually makes kids less likely to respond to their name. So in my book and my courses in my work, in the blog, I talk about how to stop using the child's name and then just to pair it up with good things. So when you're pushing one, the swing actually say no swinging, no. You know, as you're delivering something he wants, that's when you shouldn't use his name and then systematically call his name, deliver reinforcement real, real close to him and then gradually fade that out. So it sounds like you you've managed to follow a lot of steps in my system in the turn autism around approach. And it's and it's working, but it's still a long way away. And so how are you feeling right now? Like are you are you really worried that it's going to be autism? Are you sure it's going to be autism? Are you like what's your state of mind in terms of autism?

Casey: I'm sure it is. And at first that was hard for me to come to terms with. You know, it's like I, I wanted to think it's just a language delay or covid kid or whatever it is. But at this point, it's like I know what it is and I'm OK with it. It's that's how God made him. And but I still also want to do everything in my power to make sure that he has the best chances to be as I have an easy time in life. So having the tools to teach him early and make sure that he kind of has the more typical experience, if possible, I'm definitely going to do everything in my power. But it's hard. It's hard to turn it off like and kind of take a break for yourself. It's like I feel like any time that I have that's down time. I feel like I should be doing something with him, trying to like some sort of exercise or so it's difficult. I do get a lot of guilt with along with this just because sometimes I feel like I'm not doing as much as I should be or can do.

Mary: And some of the, you know, the stories within the book or the people in the online course who are showing really great progress in their heads, is that is that do you get inspired by that or do you get like. Oh, boy. I don't want to wish for something that big?

Casey: No, I find it I think it's really inspiring and I think that sometimes it's like I would like to know the context of, you know, it's like how many hours a day are they working with their son? Am I not doing enough? Should I be doing more? How am I going to get the same results? And I think that also just keeping in mind that each child is different and my results with Noah aren't going to be the same results as maybe with it's going to be different and it's going to be a different pace. And some like you said in your book, some children are going to go from zero words to one hundred words because all of a sudden it clicks for them and sometimes it's going to be a longer process. And so I think for me, it's just like is looking at their stories and being super happy for that family and super hopeful for mine. But also keep in mind that Noah's results are going to be different than each child that is given as an example.

Mary: And how about the professionals in your child's life, maybe in Oregon or if you've gotten anybody in California, have they been open to working with you or open to the methods that you're using?

Casey: Yeah. So our early intervention specialist that I'm currently working with, he's wonderful. And on our first meeting that we had, we've only had two meetings so far and there are through Zoom because of covid. But when I was talking with him, he was so impressed because he's like, you know, the terminology. You've been writing things down, you have everything recorded, you know what to ask for. And so he was asking a lot about where I was getting all this information. So I'm like, well, you need to go look up Dr. Mary Barbera. And then you'll. And so he did and came back to our next meeting and he was really excited about that. And so at the end of our second meeting, he's like, you know, with a lot of parents, we don't get this sort of progress after 20 meetings. So to see the progress that you're getting on your own plus with what we're doing is really exciting. So I am getting a lot of good support on that. And he's very, very encouraging of what we're already doing and also learning those techniques and why we do them and why they're working. So it's been really easy to integrate with the early intervention program. So it's been really nice.

Mary: And that's good. That's really good because and I wrote my book mostly for parents like you. What age is parents of children ages one to five with signs of autism with or without a diagnosis. But I'm really hoping that I wrote it in a way that early intervention professionals and grandparents and aunts and uncles and concerned friends and even just parents of typically developing kids or parents with kids with who it is just literally a speech delay or maybe early signs of a learning disorder or ADHD will not freak out by the autism on the title and actually dive in, because I think there are many, many chapters that are going to be relevant to any and all children.

Casey: Yeah, and it's interesting that you say that, too, because I actually got quite a bit of pushback from some of my family for even taking this course because autism and what I explained to him, I'm like even from the first little bit of this book, even if I had a typically developing child, the tools that are in here can help any child that is struggling with speech, eating, potty training, sleeping. It's things that can be implemented with any child.

Mary: Yeah, yeah. I say in the first chapter or two in a little box. Yeah. It's, it's right here. I have the book page 15. So in the first chapter it's the little box is called the A Word. One thing you're going to have to get over is using the A word. The woman who suggested Lucas try ABA even if he only had a speech delay gave me the permission I needed to look into autism. The strategies outlined in this book should work when used by caregivers or professionals trying to help any children with any social communication delays, sensory processing issues, severe tantrums, or those having difficulty with sleeping, eating, potty training or going into the community. So if you've picked up this book and don't want to use or read the word autism, I get it. But keep reading, please.

Mary: And I mean, it's kind of a balance because I am known in the autism world and my techniques are shown to be really effective with kids on the spectrum. But I really wanted to, with this book, go back down the mountain and help the moms, just like you, Casey, who are struggling, waiting, worrying. So I'm happy that you have found that the strategies in the book and in my online course are really helpful to somebody like you, because somebody like you is who I wrote the book for.

Casey: Yeah. And I mean, just I think that anyone who is unsure or just worried or wants I mean, doesn't want to sit around and wait like that's I think that's the biggest thing is like when you start to notice those things and you don't want to wait, you want to have some sort of action, it's the perfect way to get started. And worst-case scenario, maybe your child does just have a speech delay, but then you have tools to get them caught up. So I think it's a fantastic way for parents who are wary just to get started.

Mary: Right, great, so there are parents and professionals listening, we actually did a podcast listener survey, which I talked about in episode 109 and actually 70 percent are our parents on a lot of them with very young children. So if you so if you're talking to the parents who have very young children that are listening right now, what top three tips or advice would you give them?

Casey: I think the first thing is take the fear out of your situation. I was super afraid when every time I think about autism, I was afraid of what Noah's life would look like in the future, how our relationship was going to be going forward, how my day to day was going to look. And so for me, just taking that component out and just focusing on what can I do today to start making things easier or helping him communicate better so it's not so frustrating or what can we do to build our relationship to find that common bond that makes us feel good, that sort of thing? It was really helpful. And I think another thing is just start doing some research or start doing something sitting and waiting and hoping that some professional or your pediatrician or your speech therapist or whoever is going to do it for you is not going to work, because even if it wasn't covid, maybe you could just see him once a week and maybe that's in person. But the way things are right now, one Zoom meeting every two weeks is not going to get your child the resources that they need.

Casey: So just really taking charge of the situation and making sure you're the one in control of it is really empowering and kind of takes away some of that nervousness about how your child's development is going to go. Because when you know what you're going to do and you have a plan, it kind of makes it a little bit easier. And then for a third thing, maybe just taking some time to really process what it may be and looking at, OK, so maybe autism is the worst-case scenario in your mind. What does that look like for you? And worst-case scenario, what is it? And then from there you have that and then say, OK, well, if that's the worst-case scenario, then I can deal with it. I can do this, I can make it better. And kind of taking, I guess, again, taking the fear out of the autism word and just looking at it for what it is.

Mary: Yeah, I know. When Lucas got diagnosed and I was on the car ride home, I think this might be my first book. But when I'm driving home with my husband and Lucas is in the back seat and I'm crying and my husband's like saying things like, he'll never college, I'll never get married. And all this, you know, not things you should be saying. Right, as you just got the diagnosis like, you know. And at that moment, Spencer, my other son, was only 18 months of age. And I'm like, we don't know that Spencer's going to get married, go to college, do any of these things. I mean, you know, at that moment, I realize, like all my expectations for how my future was going to look or how my kids' futures were going to look was really kind of a little silly and crazy because you have no idea how your life's going to turn out and all you can control is what you do today and tomorrow. And that future casting of how your life's going to look, I think just leads to, you know, it could lead to all kinds of things, even if you don't have autism in your life. So kind of in that moment, like all my expectations of like living in the suburbs with, you know, happily married, with two point five kids went out the window, I'm like, you know what, we have no control. What's going to happen?

Mary: So, you know, this autism word or diagnosis is is really like what you said about like not having the fear and not trying to think 20 years down the line when you have an 18-month-old. Let's just think about what he can do, OK? You can't point any more. He used to point, OK, he can point. Let's teach him to point. Are you not responding to his name? He's not happy. He's not sleeping well. He's not OK. What can we do to make his life better and by extension, make your life better and make your relationship better so that you can be positive and you can have hope that things are going to get better and that my goal is for each child to reach his or her fullest potential. And that's a moving target. So once they get to this level, we keep moving up. And it's the same for my typically developing son as well. So I think you're in a good headspace for all of this.

Mary: And I feel like you've learned a lot already just from taking my course, reading my book and from all the other professionals that you've interacted with to this point as well. So speaking of professionals, there are quite a few professionals listening as well. So would you have anything to say to professionals, physicians, therapists?

Casey: You know, most of my interactions have been pretty positive and people have been supportive once I've gotten my services in place, but I think for anyone that's listening, that's a professional and maybe I'm sure they may be doing this already. But when a mom says something's up and they know something's up, I try to take her word at that and be supportive of that. Even if it's not the case and you find that along the line or whatever, validating the concern and the fear and whatever feelings that might be going on is, is very, very important when you're dealing with something that's so life changing. So if all it takes is just saying I feel you, I hear you, I, I'm understanding what you're saying. It goes a long way.

Mary: Yeah. And makes me think of something I read somewhere a long time ago. I don't have a reference, but one of the major red flags for autism is when the mom thinks it might be autism. So moms really have that instinct and especially a mom like you who is going to research, who's going to find a way. And if a mom thinks that there are delays or differences, you know, it's hard to tell at a pediatric appointment or a one-time evaluation, really the crux of it. But trust the mom. So I think that's a great, great thing.

Mary: OK, so I think this was a really nice interview in terms of, you know, really speaking to the moms out there who are waiting and worrying and probably going to be entering officially the autism world and that there's a lot you can do while you wait, while you're getting services like even when Noah gets services, that doesn't mean that your job is done and that you can, like you said, just hand them off to a professional who's going to remediate the situation, because especially with covid, it relies on the parents a lot more even today than it did a year ago, which is unfortunate. OK, so we like to end the same way. Part of my podcast goals are for not just to help the kids, but for parents and professionals to be less stressed and lead happier lives. So do you have any self-care tips or stress management tools that you use?

Casey: I think the biggest thing for me, and I mentioned it a little bit before, is accepting time off and knowing that not every second of my day is delegated, delegated to working with Noah and doing, you know, autism things with him, that it's OK that if I want to sit and watch my stupid TV show and turn my brain off, I can do that. And it's fine. We'll start again tomorrow and everything's all good. But yeah, just allowing yourself that time to turn off and not think about autism and allowing yourself a little bit of grace when you need more time one day, then the next day, you know, every day is going to be different and and not forcing yourself or your child to do things that aren't productive that day is is really, really important.

Mary: Yeah, I love that. Give yourself grace. And, you know, it takes some time for yourself, even if it is watching TV or somehow relaxing because you have the days are long and especially working from home with a toddler and it's a lot of hours to try to engage your child. So being aware that every second of every day does not have to be learning time and mom on time to really make it. Sounds like you're doing really a great job advocating and teaching Noah. And I'm excited to see how he progresses over the next months and years. So thank you so much for sharing your story with us, Casey. I'm sure it's going to help a lot of people out there. So thank you very much.

Casey: Thank you for everything. And thank you for access to the manuscript.

Mary: Thanks so much for your time.