Inspired by bloggers Kate from Finding Cooper’s Voice and Autism Adventures with Alyssa, I participated in the 25 Days of Autism Challenge. On my personal and business Facebook page, I shared photos of Lucas, our family, and memories of our autism journey. Each post responded to a prompt in which I captioned it to describe a bit about what was going on at the time with Lucas or our family, or in general, how it made me feel. This was such a fun challenge to do and I really wanted to share it with my podcast community.
This episode is a little different from others, so if you’re new or someone who typically listens only through the audio, I suggest you take a look at the video that goes with this episode as well. I share and show all of the pictures I used for this challenge!
I go through all 25 of my posts to describe the pictures and their relation to our autism journey. I have learned many lessons along the way that prompted and pushed the creation of Turn Autism Around. It is my goal to help children and adults lead safer, more independent, and happier lives.
It was so fun to take part in this challenge and even go back and talk about these posts. If you’d like to see the original posts, you can check those out at MaryBarbera.com/Facebook.
- A look at my journey with Lucas and his diagnosis of autism.
- What are the early signs of autism?
- The importance of getting out of autism denial
- Autism and the grandparent connection
- Early intervention for signs of autism
- Our experience with moderate to severe autism
- MaryBarbera.com/workshop (Sign up for a free workshop online for parents & professionals)
- Siblings of Autism: Interview with My Son Spencer Barbera
- Autism and Tying Shoes
- Autism Transition Strategies: 5 Steps to Smoother Transitions
- How to Get a Parent Out of Autism Denial
- Tameika Meadows: Good ABA Therapy
- Dr. Temple Grandin and Dr. Debra Moore on their Latest Book Navigating Autism
- Victoria Boone: Positive Parenting for Autism
- Teaching Body Parts to Children with Autism
- Autism and Grandparents: What You Can Do for Your Grandchild with Autism
- Amy Sutherland: What Shamu Can Teach Us About Training
- How is Autism Diagnosed? Testing & Treatment Recommendations with Dr. James Coplan
- Kate Swenson: Finding Cooper’s Voice
#149 Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 149
My Autism Journey with Lucas
Hosted by: Dr. Mary Barbera
You're listening to the Turn Autism Around podcast, episode number one hundred and forty nine. Today, I have a very different show. I'm going to try something really different and kind of off the cuff, and I know many of you listening, this is not your first episode. But if you are just tuning in, this one is going to be a little bit different. And I don't know how many subscribers out there we have who are or have only listen to the podcast and never watched any of the video related to the podcast. But this podcast might be one to watch because I'm going to show pictures and talk about my autism journey with Lucas over the past twenty five years, and it was inspired by a 25 day autism challenge, posting thing that was created by two different bloggers. One Kate from Finding Cooper's voice, who is on episode 70. We can link that in the show notes. And another blogger who writes the blog Autism Adventures with Alyssa. So each day for 25 days in September and early October. People were encouraged to post related to whatever the prompt was for the day, so I posted every day and I'm going to go through and highlight the really important ones, but I'm going to read you some of them, I'm going to talk about, you know, some of the stories I actually forgot until I was prompted to go back and look for a picture and then to write something quick about it. So I think I created an album both on my personal Facebook page as well as my business Facebook page. So I'm going to show you how you can download that. But literally, I was coming back here to record this video and I just had this huge box on my doorstep and someone I don't know who sent one of the pictures that I posted in the twenty five day posting and this is a picture of me and my husband and Lucas a few years ago in a sunflower field. It's a huge print, so thank you. Whoever did this and may have been just the company, I don't know. Maybe one of my friends, the note says, You are the sunshine in so many lives and the world is better because of it. Thanks for being you. And it's from easy canvas prints. So if it was you who sent it to me, I would love to know that. But. So thank you for that gift, and that is one of the pictures. So those of you that are listening, hang on, I'm going to pull up my screen and share, my Facebook page, so any time you want to get on my Facebook page or on YouTube or on Twitter or anywhere else, you can always type MaryBarbera.com/Facebook, /YouTube, /Twitter. So we have over 44,000 followers on my Facebook channel, and my YouTube channel just reached 100,000 subscribers with more than one million people who have seen my best video blog. They're my most watched video blog, which is a million people have watched it. And it is: Is It Speech Delay or Autism? So when you get to the Facebook page, MaryBarbara.com/Facebook, go down here to photos and then click on albums and twenty five days of autism. And that's what we're going to talk about today. So let's get moving.
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.
The 25 Days of Autism Challenge: Days 1-4
OK, so day one. The prompt was post a picture before diagnosis, and I have pictured here a picture that I used in a lot of my lectures and within my online course of Spencer being born, our first family shot and Spencer's newly born. It was Lucas first and only visit, and my husband and Lucas are sitting on the bed with me and Spencer. Now Lucas is looking down, and I didn't realize until years later that when I looked at the picture closely, I am almost positive that my husband was holding Lucas pacifier in his hand, and that's why he was looking down and kind of trying to open my husband's hands. So what I wrote on this picture was Lucas started showing signs of autism after his first birthday, but I didn't see it. And my husband, Charles, who is a physician, first mentioned the possibility of autism when Lucas was 21 months of age and Spencer was three months old. So it's just three months after this picture was taken was the first time that the A-word was used to possibly describe Lucas. And I go on to say that here is the first family picture with Lucas looking down for his pacifier. OK, so day two, the prompt was to post a picture after diagnosis. Again, this is a picture that if you've been following me for a long time, you've ever heard me speak in person or attend my online webinars or courses, you know this picture? This was the day after Lucas is diagnosed, so Lucas was diagnosed with moderate to severe autism one day before he turned three, which was July 2nd, 1999. And so this picture is Lucas standing over his birthday cake with me blowing out the three candles. And the next day, after his diagnosis was this day and it was his birthday party, it was planned for Saturday. Lucas was in a diaper only because every time I turn my back, he would strip down and I had no idea how to keep clothed. And at this point, I had no idea how to teach Lucas anything, including how to keep his clothes on. I didn't know how to teach him to use his words he had. He had a few words, and now I coined the term pop out words. Basically, they would pop out, but I didn't know how to teach him to echo my words or to talk more. I didn't know how to get him to say ball when he just said it a minute ago or a day ago or a week ago. And now I do know how. I also didn't know how I was going to teach him to Potty Train, didn't know how I was going to teach him to blow out the candles, hopefully for his fourth birthday. And so I was really in a state of grief on this day. I remember my husband taking the videos and actually crying behind the video camera, and it was a scary time because I didn't know how it was going to turn out. And I really we were both expecting the diagnosis of autism for sure. That day we were not expecting moderate-severe autism. Lucas had attended a whole year of toddler preschool on his own. He wasn't aggressive. He wasn't self-injurious. He wasn't rocking in a corner. He came to us. Always seemed like if he had autism, I was going to be mild. So I think the diagnosis of moderate severe autism was a bit shocking and scary. So that was day to day three of the prompt was posted back to school photo. So I have a picture here of a school bus, bus number 10 and Lucas getting out of the bus. But this was a picture was from four or five years ago when Lucas went to school. He's now 25 years of age, so he doesn't go to school anymore. But kids with autism or other special needs who need a lot of support can go to school until they are 21 in the United States.
So Lucas transitioned from public school to a pre-vocational program one mile from my house after the school bus stopped coming. He used to go to the pre-vocational program Monday through Friday, 8:30 to three o'clock with a one to one aide who would transport him back and forth as well. But this pre-vocational program closed suddenly with COVID in March of 2020, and Lucas never went back. He could have gone back for a couple days, couple hours wearing a mask. But right, I mean, before COVID, the pre-vocation program was getting less and less appropriate for Lucas. They didn't have a lot of work, like when they started, they had a lot of work that he enjoyed. And with COVID, they really I couldn't imagine that they would have any kind of productive work. It would just involve him doing puzzles and playing Uno, and I didn't think it was appropriate to send them back. So now, at the age of twenty five, Lucas spends his days doing volunteer work, taking walks, playing games, doing puzzles, making meals, doing wash, and it is less structured, and requires more work to coordinate. But he is happy, and that's what's important. So I thought I'd write a little bit more about how kids can go to school until they are 21 in the United States. A lot of people don't know that. And also, you know, everywhere, wherever you are living in the United States or outside of the United States, once kids do turn 21, funding is way different, is usually not available and services are a problem as well. So I don't really talk all that much about exactly how to get services or what services Lucas has because it was a big advocacy journey with me, and it really is very dependent on your your individual circumstance. And as a professional, I really want to focus my efforts mostly on helping get parents empowered to detect and treat the earliest signs of autism and to help as the child gets older, to help parents and professionals work in their local community to get services better for that child. Because at that point, just an online course is not going to be the answer. OK, day four is post a milestone, and so I was going to post a picture of Lucas riding a bike or, you know, things that go like that learning to walk. But I posted a picture of Lucas tying shoes. And he has met many important milestones along the way. But I think among the most important ones that Lucas uses every single day include, Lucas learning how to shower, how to dress himself and how to tie his shoes. Lucas could have learned to tie his shoes earlier, but I didn't know how to teach him. He was 14 years old when I did. Actually, it was because I got roped into doing a presentation on Tag Teach that I had to kind of pick something and teach Lucas. And so it was shoe tying and it only took a few weeks of five minute sessions. Actually, I created a little study on shoe tying with him. And it also took some time to generalize the skill because of course, once he did learn to tie his shoes, it was summertime and he started wearing sandals more. And so it requires some time to generalize it. But I do have a video of the tag teach procedure I use with Lucas back in 2010, and we can link that in the show notes. And we also I also have a video blog on shoe tying that is more recent and we can link that in the show notes as well.
The 25 Days of Autism Challenge: Days 5-9
OK, day number five was post a photo of your child at age two, and so I posted a picture of Lucas and his younger brother, Spencer, and wrote Lucas, two, and Spencer at six months old. Even though my husband mentioned the possibility of autism a few months before Lucas seemed to be more engaged in the spring and summer when he turned two. We weren't discussing autism or thinking that we should take any action. We were hopeful that starting toddler preschool and speech therapy would help him, which it did. But he continued to fall further behind and was diagnosed with moderate-severe autism one day before he turned three OK, day six in the twenty five days of autism challenge. I have a picture here of Mother's Day 1999. The prompt was post a photo of a time you were at your lowest as a mom and no one knew. So this was May of 1999, when it was becoming apparent to everyone that Lucas had autism and I was looking into getting him evaluated. My mom and mother in law were celebrating with us and we have a picture here, which is great because Rita died seven or eight years ago. My mom is still with us. She just turned 82 and my both my parents are at Marie Lynch. They are still with us and they are following along. They followed along every day, and it was actually my mom's idea to put these twenty five days of posts into an album so that she could actually go through them one by one in order. So thank you for that idea, which kind of spurred me on to do this podcast as well. OK, so back to the picture. So they were celebrating with us and later, after they left, my husband told me that his mom, who hadn't seen Lucas for a few months, was very concerned that he might have autism. But he told her I was in denial and she shouldn't bring it up. I didn't know anything about autism back then or how to teach Lucas anything, so I was scared by trying not to show it. Lucas is amazing and happy now, but I sincerely believe that if I knew then what I know now, Lucas would be much less impaired. He would be more independent and have a lot more language.
So that's what I wrote for day number six, day number seven, we were to post a photo of your child with a family member and talk about their relationship and how it differs from the norm. I have a picture of Lucas with his brother, Spencer, who's eighteen months younger, so I wrote. Lucas has a very special relationship with his brother, Spencer, who is 18 months younger. Since Lucas is not conversational, their relationship is different than typical sibling relationships, but still very special. Spencer talks about their relationship and his role as a sibling in a fan favorite Turn Autism Around podcast episode, and you can check it out at MaryBarbera.com/85. And we will link that in the show notes for sure. OK, day number eight, we were supposed to post a picture with an animal, and here I have Lucas around 15 months with his grandparents dog bogey. And I wrote, This is Lucas, when he was about 14 months old, when his grandparents dog. But we we don't have any pets, and we never did. So when I found this picture of Lucas with Bogey today, which was a couple of a couple of weeks ago in Lucas's photo album, which he loves to look at. I asked Lucas, What's this dog's name? And he said, Clearly, Bogie. What is amazing is that this dog has been dead for over 15 years, and no one has asked him to name the dog that I know of anyway for over a decade. Lucas has an incredible memory for people and pets from long ago. So that was a really nice picture, and that was Lucas had a regression around 15 months, and I do remember looking back at the pictures this time of year. Lucas was waving and pointing and really interactive. So it's kind of bittersweet to look at pictures from that time. OK, day number nine something unique about Lucas. I posted a picture of Lucas recently at the beach, and he has a big smile on his face. And the unique thing I said was that he likes to go places and he's always ready to leave. Here he is, smiling. When we told him it was time to leave the beach and I wrote, I remember when Lucas was being evaluated for autism, the professional asked, How is he with transitions when it's time to leave? I told her he runs to get his shoes, she said. But what if he really likes what he's doing? And I replied, he thinks the next place might be better. Most kids with autism do have trouble with transitions. So uniquely, Lucas does not. And I wrote a video blog I did a while back on the five steps for smoother transition, so we can link that in the show notes as well.
The 25 Days of Autism Challenge: Days 10-14
OK, so day 10, we were at a post of birthday party I already posted when he turned three. Here is a picture of Lucas Spencer and Charles at a small birthday party. When he was five and Lucas covering his ears. He developed noise sensitivity before his diagnosis and covered his ears a lot back then, especially an anticipation of loud noises. He loves birthday cake, and we have learned over the years to sing the Happy Birthday song very softly, and a couple of people wrote. Commented, Why does Lucas have headphones on so much? You know, and they also people ask, you know, is covering your ears a sign of autism? Cover your ears is a sign that you have noise sensitivity, which can be a sign of autism, for sure. In chapter two of my book Turn Autism Around, I do talk about noise sensitivity and and then a lot of times and in Lucas's case too. They lack responsiveness for language, calling their name, and this can also be a sign of autism. So Lucas had both noise sensitivity to loud noises and startling noises, as well as under reactivity to his name. OK, day 11, post a sibling, cousin or friend. I posted a picture of me and Spencer doing this podcast, and that's episode 85, which we already talked about so we can move right along. Some of these are not going to be as in-depth discussions. Day 12. We posted a picture of a holiday. I have Lucas here last Christmas, I believe. And he is popping bubble wrap. Lucas likes holidays and family gatherings to celebrate, but he never asked for gifts, so it's hard to know what to buy him. Over the years, I've learned not to stress about it and just wrap up snacks, clothes and anything else I can think of that he might need or maybe would like. And so when he lights up popping bubble wrap from Spencer's present, it's a win. I know a lot of people, you know, do stress out well. I have nothing to buy. And my other kids are getting, you know, 10 presents and he can't. He doesn't ask for things. I think we just have to, you know, celebrate the good things like him liking bubble wrap and wrap up some things that you think he might like.
OK, day number 13 post a picture at three. So I have a really cute picture. One of my favorites of Lucas on my back, and we're both sitting on an exercise ball and he is three and a half. So here's what I wrote. I already posted a picture of Lucas's third birthday the day after he was diagnosed with moderate severe autism. That day was very depressing, as I had no idea how to teach Lucas anything, and the diagnosis seemed so heavy. But I knew on his third birthday that he needed ABA, Applied Behavior Analysis Therapy, and I started making calls the following Monday. Lucas started ABA at three years, three months, and here we are in the picture. A few months later, when Lucas was making progress and I was learning how to teach him everything. I felt a lot more hopeful, and we both were a lot happier, too. I know in my heart that if I knew back then what I know about treating the earliest signs of autism, I would not have gone into a state of denial for over a year, and Lucas would have started ABA earlier and would most likely be more independent with better language today. So I don't want to keep dwelling on this. I mean, nobody has a crystal ball to look backwards, to look forwards. How would he have turned out had I got to services earlier? Not going into a state of denial, I did a whole video blog on how to get somebody out of denial on one of the major things that got me out of denial was learning about applied behavior analysis treatment and that there was hope. So I want to bring that hope to parents as early as possible, too. And like I say, it's never too early and it's never too late to start. Good ABA programing has to be child friendly. I've done a lot of video blogs, especially recently. I did one with Temieka from the I Love ABA blog. I did one with Temple Grandin who talked about, you know, how there are some people that are anti ABA and to get good child friendly ABA is just so important. I did another one on ABA with Victoria Boone recently. We can link those in the show notes, but I'm here to say that if you hear that ABA is abuse and that how dare she talk about turn autism around? And we shouldn't be trying to treat autism if we are trying to help kids get better, as better as they can to improve their language, to reduce any problem behaviors, to reduce any struggles, to help kids get more independent. We are not trying to change a child's personality, his interests, his likes. We are just trying to help each child reach his or her fullest potential. That's what we mean by turning autism around. It's always positive and child friendly. And so I need you as listeners and followers to continue to be the army of support to get a good child friendly ABA accessible for a lot more people with my books and my online workshops, my online courses, as well as local to continue on or to start being a whole lot more child friendly.
OK, back to our days. Day 14 communicating in a unique way. I posted a picture of Lucas holding a VHS box with the title Arthur's Tooth. Now, for those of you that are too young to even. Remember VHS tapes? Lucas still uses VHS tapes all the time, he loves his old videos just like he can remember, you know, a dog's name from 15 years ago that he hasn't seen in 15 years. He knows a lot about his old videos and and Arthur's Tooth is one of those videos. So how he communicated in a unique way. Here's what I wrote. The very first time Lucas communicated he was in pain was when he was almost five years old, and he just had his tonsils out a few days prior. My pediatric nurse friend warned me that Lucas might wake up in the middle of the night on the third or fourth day post-op and might be having the scabs fall off, which usually happen when the kids are sleeping and the throat gets dry, so he might start screaming when this happened. So just as she predicted on the third night post-op, Lucas woke up crying and yelling, but he was yelling Arthur's Tooth, which is the video. He watched a lot with Arthur getting his tooth pulled, and he cries and yells when someone pulls his tooth out and he's obviously has mouth pain. So when Lucas was yelling about his throat hurting, he was saying, Arthur's tooth, Arthur's tooth . So four months after that, Lucas would say Arthur's tooth. When you have any kind of pain, he would fall and scrape his knee. He'd be rubbing it, saying, Arthur's tooth, which was an amazing way to start to communicate. He was in pain. And so for over a decade, Lucas can tell us what body part is causing him pain, which is so important. He still has sometimes problem behaviors when he has severe head pain. But, you know, I remember one time he had a stiff neck when he woke up and he's like, Booboo on my neck or neck hurts. I forget how he was saying at that. I do a lot of work around this, teaching kids body parts and teaching them to indicate that they're in pain. We can link those video blogs in the show notes. And if you're driving or running and you're listening and you're thinking, I can't get to the show notes, I forget what she's saying. You know anything that I say, you can always just go into a Google search and type "Mary autism plus.....", if you want to type Arthur's tooth, if you want to type express pain, you can always find my stuff by searching. So that's also a good tip to spread around. So I like to post in groups or whatever. I know Mary has something good about this. Just search Mary autism plus sleep and see what she has to say because I have a lot to say and I've said a lot over the years, so you can check that out.
The 25 Days of Autism Challenge: Days 15-19
OK, Day 15 is a really short one. It was a fall activity. I just posted a picture of Lucas painting Pumpkins Day 16 as in nature, and I said, Lucas loves to be outside at the beach in a boat, walking on the trail, behind our house, a pool. And I posted two pictures on the original post, but it only posted this one of the picture of me, my husband and Lucas in the sunflower field, which is the huge canvas that I just got in the mail right before I started recording. Day 17 showing love. And I wrote, I posted a picture of Lucas and Spencer Christmas several years ago. Lucas has always been affectionate, so when the pediatrician were to ask, Is he affectionate? Does he let you hug him? Does he sit on your lap and want to be carried? The answer was always yes. Unfortunately, the pediatrician didn't ask about pointing, which Lucas was not doing hand leading, which he was doing. And the hand leading is when the child takes your hand and places it on a cookie or water or puzzle piece that's called hand leading. And that is can be a sign of autism and definitely can be a sign of an expressive language delay and probably a receptive language delays as well. So he wasn't asking about pointing. He wasn't asking about hand leading, and he didn't ask about responding to name, which was an issue for Lucas as well. Lucas's pediatrician didn't know the early signs of autism, and sadly, many parents and pros still don't know what they are. That is why I wrote my book Turn Autism Around: an Action Guide for Parents of Young Children with Early Signs of Autism. And you can check out the first chapter actually the first two chapters, one in writing and one on audio. I actually recorded the whole book for Audible, but you can check out chapters one into and get all the free resources, whether or not you buy the book or not at TurnAutismAround.com and Lucas, I wrote. Is still affectionate with us, and here's a nice picture of my boys from six or seven years ago. OK, day 18, remember we're going to twenty five here, so hang in.
Day 18 is posting a picture at age five. And here's what I wrote. Lucas's birthday is in July, so he quote unquote stayed back in the toddler two year old preschool classroom after he turned three and was diagnosed with autism because of Lucas's delays. Even before the diagnosis, the teacher and preschool director recommended that he be held back because the ratio got worse, with more kids per teacher and a child in the three year old class needed to be potty trained. Also, Lucas had only a few words before his diagnosis, and I had no idea how to teach him anything. So this is important information. I know there's a lot of people out there who have little kids and are wondering about should they start them in daycare or preschool for socialization. What happens if they're not potty trained? And, you know, I know a little girl. I feature in my book Faith. Her mom was paying a premium, an extra fee at daycare because she wanted her and the three year old class, but she wasn't potty trained. So I also added that Lucas redoing the toddler class two mornings per week with the same teacher and having an a one to one therapist to support him in there, who also came to my home was ideal. So when Lucas was two, he went to the two year old classroom alone with Miss T. Then the year later, with the diagnosis and support, he went with her one to one, the ABA therapist still in the two year old class with Miss T. And that really was great for him, and he had a pretty good teacher student ratio. Still, they weren't required to be potty trained and the kids were younger. And the other important thing I added here, if you have little kids, I didn't realize that most quote unquote summer birthday boys, even those who are typically developing without delays or autism are held back from starting kindergarten until they are six. I also didn't know that children only need to start school even at home school situation at the age of eight. That's the age of beginners. So a lot of kids, even typically developing kids, are held back because especially boys, because they tend to mature later for sports reasons, for academic reasons. And so those are the things I learned about school and being held back. But for Lucas, it was ideal to have him with kids that were younger when the expectations were a lot less as well.
Day 19 in the community One of Lucas's favorite things to do is eat at restaurants. He almost always orders chicken and fries, but is always happy to try places. Over the years, we've taught Lucas how to order his food, ask for more water use. An app can use utensils, used public restrooms, etc. Here we are on Lucas is 23rd birthday at one of his favorite restaurants, and it's just a picture of me and me looking at Lucas and him with a big smile. I know a lot of these pictures that do have really nice smiles, and Lucas doesn't sometimes over smiles for pictures, so it's actually quite a challenge to get pictures this good. So we have featured some of the better ones.
The 25 Days of Autism Challenge: Days 20-25
OK, day 20 post a baby picture and I posted Lucas, a six month baby picture. It's adorable. He was happy and bright, and we had zero concerns about his development. And I wrote while I took a developmental psychology course when I was in my undergraduate nursing studies, I had no idea it was my job to monitor Lucas's milestones, and I trusted my child's pediatrician to let me know if something was not on track. Once Lucas started to show early signs of autism, lack of response to his name, lack of pointing, communicating by hand, leading, not playing with toys appropriately, not following directions well and minimal language. I missed all of these milestones and sadly, Lucas's doctor did too. Then when my husband said the word autism, when Lucas was twenty one months of age, I went into a deep state of denial for over a year, which did not help Lucas, me or anyone. Actual studies do show that parents recognize the earliest signs of autism by 18 months usually, and kids are not diagnosed until roughly about four years of age on average. Minority groups are even later, and so there's three and a half years where parents are worried and not taking action. So all of my work is focused on this frightening statistic, which is not really getting much better over the past two decades.
OK, day number twenty one, I wanted to post both pictures. I actually had to cut out some of it in the beginning, but Lucas was lucky enough to have all four grandparents in his life for the first ten years of his life. Maybe a little bit longer. Here he is. I showed a picture of all four grandparents holding him when he just got out of the hospital, and a more recent picture with our family, with my parents who live very close by and my parents are, like, I said, still really involved. And I believe that supportive grandparents are such a blessing to families, and I love to meet and hear about gung-ho grandparents. One of my favorite Turn Autism Around podcast episode is with Grandma Diane, where we talk all about grandparenting kids on the spectrum. We will link that in the show notes.
Day 22 is post a picture of therapy or a therapeutic activity. I post a picture of Lucas on his bike. When most people think of ABA therapy, they think of kids sitting at a table, being taught with flashcards and as a BCBA and a mom, I am a big fan of lots of table time and child friendly AB with all children with the delays so that you can teach them to talk, to reduce tantrums, improve eating, sleeping, potty training, leisure play skills, etc. Now that Lucas is 25 years old, his ABA looks different than when he was little. Today, for instance, Lucas got up and did his morning routine, going to the bathroom, brushing teeth, getting dressed, making breakfast which have all been taught with ABA. These tasks are pretty independent, but he still requires some supervision and assistance here and there. Lucas also went on a bike ride where again we used ABA principles of modeling, prompting to ring the bell when someone was in his way, which is a new skill and reinforcement. So I just thought that would be a good thing to post because people again have this very narrow minded view of ABA and ABA is happening all around us. We've had podcasts, a recent podcast with Amy Sutherland, who is the author of the book What Shamu Taught Me About Love, Life and Marriage. ABA is happening all around us, whether you like it, whether you believe in it, and we really need to use it. We need to get really good at using ABA to strengthen behaviors and make our lives a lot more positive.
Day twenty three Post a picture of a vacation and I posted a picture of Lucas and I leaning over a balcony watching a show at Disney World in Florida when he was two. This was December 1998, when Lucas was two and a half. He was not diagnosed with autism and was going to weekly speech therapy and attending a two year old toddler preschool two mornings per week. Here we are on vacation at Disney World in Florida. Watching a show with Spencer was 11 months old and took his first steps while we were on this trip. After Lucas's diagnosis of moderate severe autism six months after this picture was taken and as he got older, we've taken only a few family vacations besides going to the beach, which is about two hours from our home. Lucas loves to be home. Even when we take him to the beach, he requests to go home after a few days of us being away. He loves to go to familiar restaurants and be surrounded by people that know his routine. Spencer, Charles and I, on the other hand, have traveled quite a bit. We've gone international several times. I've taken work trips and trips for pleasure all over the place. We did take Lucas on a cruise. We took him back to Disney when he was about eight or 10 and that those times went OK, but he is. Lucas doesn't understand museums or waiting in line. At one time I was flying to Nashville and I had Spencer with me and the plane was on the tarmac for five hours and then the bathroom broke, broke and I was just like, Oh my God, thank God, I don't have Lucas with me. You know, as Lucas has gotten older, you know, airlines have become stricter and stricter, and now we add COVID to the mess. So we don't really struggle with knowing that we have to separate in some instances and take vacations without Lucas in order to see the world. Because we know that Lucas would not tolerate a long plane ride a foreign country, there would be too many....We would need too much help to make him safe, and he would not be happy. So I know people struggle with that with vacations and knowing, you know, you want to do things as a whole family unit. But Dr. Copeland, who diagnosed Lucas, who was on a previous podcast, less length on the show notes as well because he's he's a great guy, and he had a lot of great advice on that podcast episode. But when he diagnosed Lucas, he basically on that day, I remember him saying, You're going to have to do things with Mary and Charles as a unit. You're going to have to do things with Mary, Charles, and Spencer. You're going to have to do things with all four of you. You're going to have to do things with Mary and Lucas and Charles and Spencer. And, you know, doing things in different configurations in your family is going to have to be an option for some things that I think vacations are one of those things.
OK, day, twenty four, age seven and I posted a picture of my boys on a trampoline that we got for Lucas's seventh birthday, and I'm not 100 percent sure this is actually when Lucas was seven. I am really thankful that I had a baby book that goes up to age five for Lucas, all the scrapbooking special things that I had time and motivation to do when the kids were young. So actually finding pictures from like, you know, after five until more recent when everything turned digital is really challenging. So I'm not positive. And I just wrote a little bit that regarding trampolines and sensory issues as Lucas and almost all children with autism that I know have big sensory needs that are either sensory seeking, jumping on the trampoline or on the sofa, or sensory avoidant, picky eating or covering ears for loud noises or a combination of both. With everything, there's a lot of confusion about preventing and treating problem behaviors versus meeting sensory needs, so I have some video blogs on the topic. So instead of linking everything, just search Mary Autism plus sensory to watch those blogs. You can also check out blogs on picky eating and any other topic that is sensory related.
OK, we are wrapping up with Day twenty five and this post is changing the view of the world, and I posted a more recent picture of Lucas and I at the beach and I wrote, Actually, this is somewhat similar, very similar to the dedications in both my books, as well as the posts that I did for Lucas's 25th birthday. But I wrote over the past 25 years since he was born. Lucas has taught me and others to be more patient, to always be kind and gentle, and to focus on the positives that there is no such thing as normal that we will all have one life to live, which will continue to be a marathon on a roller coaster. Love unconditionally, to hope but not to expect, and to appreciate the small steps along the way. Lucas continues to inspire and help change the way autism is detected and treated around the world. So each child and adult can reach his or her fullest potential and be as safe, as independent and as happy as possible. I am forever grateful.
And I think there's probably no other way better way to end this. It's been a huge journey over Lucas's lifetime, which has been 25 years. I've learned a lot. I continue to learn every single day. I continue to learn something new, something new to help Lucas. Something new to help others, something new to help myself, to make me happier, to make me more productive. And I truly feel like I am very passionate and will be very passionate about helping change the view of autism in the world. For all the days that I'm here, so thank you for allowing me to kind of take a trip down memory lane with you. Share these pictures! These 25 days of pictures and stories about my journey with autism so far. So don't forget you can check out all of these pictures on your own by going to MaryBarbera.com/Facebook in the album, you can watch this video podcast at MaryBarbera.com/149, and I hope you enjoyed it. And if you did, I would love it if you would leave a positive podcast review. Just email me. Let me know if you enjoyed it. If you'd like to see and hear more of this stuff, see more of the stuff. It was kind of fun to do that. It was definitely fun to do the challenge and actually it was fun to do this podcast as well. So I will catch you next week. Hope you enjoyed it. Have a good one. Bye.
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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