#124: Home Based ABA for Autism | Interview with Amy M.
Dr. Ami Klin says that from the initial concern of a parent to treatment for autism is about 3 ½ years. Half of the kids who have an autism diagnosis are getting treatment after the age of 5. When Amy’s son Lucas was diagnosed, the cost of the ABA programs and the waitlists were such a huge hurdle to get over, so she took matters into her own hands. Until her son got into therapy, she had her son on a strict regimen trying to teach him. A lot of her techniques mirrored some of the same techniques that Temple Grandin’s mother used to reach her.
“Put the support in when your child needs it, and pull it out when he doesn’t,” is how Amy describes the way they’ve approached Lucas’ schooling, social life, and career. She advocated for a smaller school that could handle both his autism diagnosis and the home based ABA plan that they came up with for him. And when they reached every new milestone like high school, college, and a new job, they reassessed what he’d need in order to succeed.
Wherever you’re at in your autism journey, I just want you to know that it’s always worth starting where you’re at and learning how to help your child. When you as a parent are empowered to take control of the journey, you’ll feel so much better. You can help your child make as much progress as possible, and you’ll be able to grow as a person as well along the way.
Amy M. from Kalamazoo, MI is the mom of Lucas, 24, diagnosed with autism at the age of 3, and Holly. After researching autism treatment options, Amy implemented an intensive, home based ABA program for Lucas starting in 2000. Inspired by the progress of her son, Amy pursued certification in behavior analysts and became a Board Certified Behavior Analyst in 2003.
Amy is the founder of Novel Responses, an ABA provider in Michigan with approximately 75 employees. Novel Responses Inc. provides home-based and center-based services to about 60 families.
Over the past 20 years in her roles as a parent, therapist, center director, and behavior consultant, Amy gained valuable, extensive, formal, and practice experiences in the application of behavioral methods to manage behavior and to teach skills to children with autism. With her experience as a business owner and a consultant for other ABA centers, she has acquired valuable knowledge and experience in organizational management.
- For Amy’s son, ABA therapy was like a way that they were trying to get his attention, and once they finally had it, his progress took off.
- Why Amy prefers what she calls a support method, where parents and professionals evaluate where a child is at and remove the supports when they no longer need them.
- How Amy’s navigating young adulthood with a very social son who sometimes misses social cues that might make him vulnerable to having someone take advantage of him.
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— #117: Interview with Dr. Temple Grandin on How to Turn Autism Around
— #068: Challenges of Autism Bullying, Dating Someone with Autism, and Learning to Drive with Autism
— Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence
— Novel Responses Inc.
Transcript for Podcast Episode: 124
Home-Based ABA for Autism | Interview with Amy M.
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast episode number one hundred and twenty-four. I'm your host, Dr. Mary Barbera. And today I have a fellow BCBA and a friend of mine named Amy McFarland. Amy is the mom to Lucas, who is twenty-four years of age. He was diagnosed with autism at the age of three, and she also has a daughter who's twenty-two after researching autism treatment options. Amy implemented an intensive home-based ABA program for her son, Lucas, and then she went on to become a BCBA. Sounds very familiar, doesn't it? Well, that's the whole point of this episode. We are talking all about our very similar journeys and how we kind of met each other. And the outcomes of our two sons are pretty different, even though we did very similar things. Amy, also because she became a BCBA, she also was the founder and owner of Novel Responses, an ABA provider in Michigan. We talked very briefly about that, but also her perspective as a BCBA and some advice that she would give to parents just starting the journey. So let's get to this really great interview with Amy MacFarlane.
Mary: So, Amy, it's so great to see you and to have you on the podcast. I'm excited.
Amy: I am excited. Thanks for having me.
Mary: Yeah, we met a long time ago, first on the phone and then in person. So before we talk about the similarities and differences in our journey and both of our sons are named Lucas, so that's the main similarity. But there's a whole lot more similarities that we're going to talk about. But let's talk about your fall into the autism world. When did you get concerned about Lucas and what works and that sort of thing?
Amy: Well, around the age of two just didn't really pay attention to the things around him, his surroundings, and he developed a lot of stereotypical behavior, we didn't know that that's what it was at the time, but pushing buttons over and over and I didn't. He's my first born, so I didn't really pay much attention to it. When he was two, a family member, my husband's brother had brought something up and said the A word. And we were like, oh, that's ridiculous. That's just not that's not it. And of course, then I took that to my doctor and the doctor said, can he follow directions? And I said, sure he can because he could he could follow directions, go to the back door, go to the front door. So I said, oh, good, we're good. But then at age three years, around three months, his caregiver, when I was at work was his not a nanny, but just he was in a daycare in a home with other children and she pulled me aside and she said, you know, he's hiding behind furniture when all the kids are getting together. And it's just nothing, it's not feeling right. And she actually also showed me some tongue tracks around her, her walls and said he's licking walls. And I said, oh, my God.
Amy: So that kind of freaked me out. I felt that she being that she was with a lot of kids, had a good understanding and it started to bring me along. And actually around that time, too, my husband said, you know, I've been around kids a lot. And Lucas, there's just something not right. And I just didn't want to hear it. But long story short, we did take him to a behavioral pediatrician and he was diagnosed at the time it was us. He was three years, three months. And of course, then I just dove right in to I think I felt sad initially for a day. I cried in bed and then I was like, OK, let's get to work. And I researched everything. And that's how I fell into autism and then moved into ABA as well after really doing some big time studying and some help with friends from friends.
Mary: So this was nineteen ninety nine. And your Lucas is born in August of ninety-six.
Mary: And my Lucas is born in July of ninety-six. And then we both read the book. Let me hear your voice and we both joined the ME list which back then was like a Yahoo group. It was before Facebook, before Google searches. I mean the Internet. I was just had my first AOL account. I'm sure you did too. And we started conversing on the ME list. Yes, I remember actually. It was pretty soon after. So Lucas was diagnosed at the day before I was three. So that was July. So your Lucas was only diagnosed in the fall. So I remember one of your first posts was, you know, my son has a diagnosis, PDDNOS and I'm trying to decide if I should do ABA or I should stick with just like one hour speech, one hour OT, one hour teacher time. Right. And I remember responding and saying call me my number and I'm like, you have to do ABA. And I remember I remember talking to you on the phone. And you're one of the very few people early on that actually called me or I talked to I guess there were a few. And I remember sitting in my old house in my living room and talking to you and realizing that we had a lot of similarities, both named Lucas, both born in the same summer, both motivated reading, trying to figure it out. And by that point, Lucas had had started his ABA program, though. Is there anything in my book? Because my memory's not 100 percent right, but anything that you remember that I don't.
Amy: Well, I think what I was following were the educational recommendations of Cross Categorical School, put him in the preschool setting and then. Yeah, one hour of this. One hour that. And you just said, no, no, no, that crossed categorical stuff. No, no, no. You have to look at ABA.
Mary: It was an eclectic approach. A few school settings in the preschool settings around the country and around the world have any kind of behavioral focus. Now, it's different in some situations. I can't say that it's a whole lot different experience, but back then it was like you are choosing between an intensive ABA program, which was and still is the most evidence-based treatment for children with autism versus an eclectic you know, in my county, it was maybe six hours a day. But how much one to one time? Not a lot, right. How much time is spent.Freeplay, arrival time, circle time, snack time. And that pretty much eats up a child's day. And my whole goal, and I know your whole goal now as a professional is to help people get more intensity than that. Yes.
Amy: The intensity is critical.
Mary: Yeah, absolutely. So at what point so then you did do ABA. And it really back then really varied in terms of state to state, county by county, in terms of what was available, how much it was going to cost. Luckily in Pennsylvania, somebody years prior had found the little loophole. And so kids like Lucas, my Lucas, were put on medical assistance as a secondary insurance which covered ABA at the time. So we were in a really fortunate different situation. But you had to actually lay out a lot of money for it?
Amy: Oh, we did, yeah. We were in the state of Indiana at the time and there was no funding for any ABA. There was no funding for his particular diagnosis first feature either. So everything had to be funded by us. At the time I was reading, they were stating that it was going to cost forty to fifty thousand dollars per year at the time. That's huge. And that's what people thought. Later we found it's not necessarily that expensive, it's the quality and the intensity. But my husband, bless his heart, if he's going to listen to this, he finds it hard to part with the money. When I brought it to him, I said, we have to do this. This is evidence-based treatment. It's going to be very expensive, but it's the best hope we have to get Lucas where he needs to be.
Amy: And he said, whatever you need, we will do it. You tell me what we need to do. We will sell everything and we will get him everything he needs. So and it was in the year two thousand, I think it was June. That was the soonest we could get a program going. And that was through the New Jersey Institute of Early Intervention, the Lobos site. And we started we started that flew out actually there was a husband, wife couple in Indianapolis. They didn't have BCBS at the time or it wasn't it wasn't prevalent. But there were they were consultants for the New Jersey Institute. They happened to live in Indiana. So we had one of those as our consultant. And she came once every six weeks and helped us put the program together. And we did a very intensive thirty-five, forty-hour week program.
Mary: Well, there's another similarity because we use the New Jersey Institute. Oh, okay. And our consultant drove in from Pittsburgh and she saw two boys the same day and she would she would drive in once a month and that sort of thing. So but then we lost touch so. So we took it took you. So he was three years, three months after the fall, and it took you all the way to June to actually get a program together, start paying for it. And he's approaching four. Yeah. And I just was listening to a webinar last night with a panel of researchers Ami Klin who I talk about in the first chapter of my new book, Turn Autism Around. Dr. Ami Klin has been a researcher for four decades and he gave another quote and I think it's in my book, but it's not as clear as I heard it last night. But he said from the time of the initial concern to treatment is an average of three and a half years, which you know so well, it sounds like, oh, my God, you had to wait all the way until June. You know, the initial concern was outlined by your brother-in-law. Right.
Mary: At two, maybe two and a half like that. And you got services before for which the average age is four and a half to five, and that's an average. So half the kids are getting treatment after that. And so it's really. It's really a problem, and it's the reason I wrote my new book, because parents are floundering the wait lists now we add cover to the mix. There's so much more autism. Back with our Lukas's were diagnosed. It was one in five hundred. Now it's one in 50 plus. It doesn't matter if it's going to be turn out to be autism, if it's SPEECHLEY, if it's licking walls. And actually there's a story in my book about somebody that tells of a daycare and you think like, oh, I'm putting them in daycare for some socialization and then without support, it's just like the kid could be in the corner, could be looking walls and stuff, really confusing time. So was that a hard time when you knew he had autism?
Amy: And waiting for help? I felt I had a I have a daughter as well. And at the time she was around two, a toddler. And I basically I kind of went crazy, but I had started out every day for both of them until he got his therapy in keeping him busy and doing activities as much as I could do what I didn't want. I didn't want him sitting in the corner. And it maybe it made me feel better that I was attempting something, at least until we could get the ABA in place. But I had both of my kids on a very strict schedule of activities. I would not let them sit around once in a while. I'd let them watch Blue's Clues or whatever, and then I'd get right back to it. It's kind of I look at it. I have it down in the basement. This is I actually every ten minutes I think I had ten-minute blocks time, lots of things that we were going to do. And my husband also stepped in and did a lot of taking him out into the neighborhood. There were lots of kids in the neighborhood, so that was really key too. So we kept them busy.
Mary: Yeah, which Temple Grandin, who wrote the foreword for my book, she she's in our mid 70s and she was starting to show symptoms and diagnosed with something around two and a half. And her mom hired a nanny and she was just kept busy. Right. And Temple, I interviewed her for one of the podcasts. We can link it on the show notes. And we talked about like how these kids cannot just sit on screens for hours on end or it's going to get much worse. So two questions. How far apart are Lucas and your daughter?
Amy: Twenty-one months.
Mary: Yeah. So my kids are eighteen months. So there's another similarity of a couple of months off. And then I know the answer to this, but did you have an education background?
Amy: An education background? No.
Mary: So what is your what was your background? Did you have to quit your job to keep them engaged or like how did that?
Amy: Yes, OK. I was working part time at the time. I quit that immediately to do to manage the program when I realized that it was going to be a full-time job to work with both of them. But to give Lucas the you only have one chance. And so, yeah, I have a master's in business administration and basically it was great training for actually running a home based program. Thirty-five forty hours a week, I was able to use my skills to hire people, pay people, put schedules together. I kind of was in my element and when and of course I scheduled myself into his time blocks as well, which was just a joy to see him actually responding and doing things. But it was right up my alley as far as is being able to work that hard. And then when the progress hit, I was in love. I was in love with that, with the whole ABA behavioral concept.
Mary: So yeah. Yeah. And another similarity. I feel like we should be writing these down. There must be there's going to be one hundred similarities. So I had when I had Lucas, when he started telling delays, I have a master's in nursing administration so I managed twenty four hour nursing units. That's when my job was right before I left to have my kids. And so yeah, it just made total sense, like, OK, you know, you assess your plan, you treat, you evaluate use data, you graph data. If you, if they have you graph data. The other thing is, my consultant said you need, in my experience, working with kids. She said you need to schedule three to five hours a week where it's you being the therapist. Yes. So I got a babysitter first, but. And the ice scheduled that in and that, I think was key because we had we had a full 40 hour week program actually fully funded, which was amazing, which doesn't happen anymore. But he would go to he would go to his little preschool that he went to by himself when he was two. He would actually go with one of the therapists so we could work on coordinating all that.
Amy: So I felt like you did where I was like, oh, my God, this is amazing. And then what was really frightening was. The consultant would leave. We pay her, I don't know how many hundreds or thousands of dollars, whatever she was here for, and that was out of pocket because the funding didn't cover that. So but then she would leave and then she wouldn't come back for a month. And it was like, my husband's like, OK, she comes and then we pay her money and then she leaves. And you have like 40 hours of work to do, like to get new materials to do the program to train the three therapists. I mean, they're there, but you're like now kind of the lead in everything now and then. OK, so then we lost touch and did Lucas when he started Abi, did he make a lot of progress like leaps and bounds?
Amy: He did. He made a lot of progress. It was almost like just trying to get his attention. Once we were able to get his attention, then it was like the lights went on. It was it. He really took off, gained a lot of skills very quickly and maintain them. And it was wonderful.
Mary: Yeah. And then we finally met in person. We lost touch. I forgot about you all. I obviously still remember talking to you in my my living room, but the Metellus kind of went defunct and nobody was nobody was approving messages and it just died a natural death. And in 2004, I was speaking at my first ABAI conference in Boston. And you asked somebody, which one is Mary Barbera? And somebody pointed me out and you came up and you're like, I don't know if you remember me, but, you know, I had Lucas. And turns out in the meantime, we both became board certified behavior analyst. And your mentor was Dr. Carl Sundburg and my mentor for my BCBA is Dr. Rick Cabina. But I had a lot of training and influence from Dr. Mark Sunberg, who's Carl's brother. And so we were both not only BCBA's, but we were like in the verbal behavior world full out. And I remember like thinking that is so bizarre because we've been running parallel lives here. And one of the reasons I wanted to have you on is because. You can do all the right things and keep your child engaged and and get the best of the best and, you know, and things can work out, you know, very differently, but you can still have a happy life. So you're Lucas and you actually moved states to get your kids into like a charter school where you better fit for Lucas and then your. Now you're in Michigan. And Lucas did very well. And let's talk about like, did he have real hard transitions? Like, was high school tough? And I know can you kind of just be different about that?
Amy: When we came up to Kalamazoo and went to Oakland Academy, it was a situation in which there was like one teacher for every ten students. And they were very open to me coming in and saying, if you pre-teach Lucas this, he'll pay attention here. They were very, very good about taking my recommendations and my suggestions and what works for Lucas and implementing them. And he thrived. He was in Oakland Academy. It was only good through til sixth grade then. So he was making friends. He was making great gains. The teachers loved him. He's just he's quite, quite a neat fellow. But then came, well, what are we going to do for middle school? Because this wonderful charter school, it goes to sixth grade and the middle school that he should have gone to was going to be massive as far as number of students. And it was like three floors of a building. And I said, oh, gosh, I just I did not think he was ready for that. So my husband and I sought to pull him out and put him in a different school, a different setting. We kind of had to fight for that. They didn't want us to leave and go into a different district within the same county like you were cannibalizing.
Amy: But we fought as we always fought for Lucas, and we actually got him into a middle school in a school district just south of here with a very small number of students, Schoolcraft. And I just remember looking in the middle school and they had like three, three hallways, one straight, one down here, one down here. And I was like, yes, you can do. I think he can do that. So because I just didn't think that a large number of kids at that time was going to work. And then I also looked beyond to the high school and there were six or eight hundred. I'm like, no, no, no, no, no, no. So anyway, he transitioned to middle school and he made a lot of friends did very well. We ran into and we can talk about this later on, some bullying types of things that we had to deal with. But we were in a really supportive school district with supportive teachers in resource rooms and all that. He was really on his own in classrooms with a resource room in middle school and throughout high school.
Amy: So he was in the population with everybody else and it was a small welcoming faculty and all the staff. And he did really well. And he ended up graduating from Schoolcraft High School with a regular diploma. So, I mean, you can ask me questions about specific types of situations, but I mean, the transitions were hard. But we would put I always say this to people. I said you just have to put supports in when you need it and just pull them out when you don't go with. Somebody asked me once recently about how they had done a ABA program for their kid, and then he they put him in school and then he fell apart and she felt like, oh my gosh, it must be stepping backwards to go back into ABA. I said, don't look at look at it like that. Look at it like you have to just always evaluate where they are, what supports need to put in at that time. And then when can you pull them out, if ever and when can you win? And that's kind of my old philosophy even now, which is always evaluating what skills you have, what skill deficits and put in supports when needed. There is nothing wrong with that. And that was key throughout his high school. And he did very well. And we were thrilled that we made that decision to pull him out of that of the massive school district and go where it was smaller, more manageable.
Mary: Yeah, yeah. And I think you bring up a good point, like a lot of people have the misconception that ABA is like only in a neighborhood school or only in a verbal behavior classroom or only in. A very strict home bound ABA program, but kids like your Lucas actually need to be in inclusive environments and need to. And so it sounds like the charter school, which really allowed you to go in. In my Lucas's situation, we had to fight to get a behavioral analyst to oversee his program within public school because if he just goes from year to year with new teachers and new staff and without anybody passing the baton or knowing how to teach him his behavior plan, knowing how to run his program, he would fall apart. So everybody needs an individualized program based on strengths and needs. And like in my book, I have a one-page assessment. And then the one-page plan that comes after the one-page assessment is strengths on this column needs. On this call, you get all that information from the one-page assessment and then you come up with a plan. So programing for my Lucas' along the way and programing for your Lucas' were completely different. And I think in sometimes it's harder in your situation where the kid really does need inclusive environments and then you get like he looks too good for us to be really doing anything. Mom, you're just being a nervous wreck. You're hovering. You're helicoptering like, did you get that?
Amy: I don't think so. I really didn't have that. I had good relationships with everybody. And long as they let me come in when I felt like I needed to go, we were all good. And so the choices we made with regards to his school were really good in that way that they let me come in and I'm kind of a hands off. And believe it or not, it's hands off is kind of my philosophy, except when it came to Lucas. So I wasn't overbearing. I just check in, make sure things are going well. And I think one of the things, too, I want to bring up at this time was Lucas was doing really good socially. He's like this anathema, like socially he is he all he wants to do is be around friends and all of that. And and I struggled sometimes because I would get feedback from teachers and they'd say, oh my gosh, he has so many friends, they love him. And I would be like, really? You know, I didn't know because he could be goofy. He can be immature. I never really knew if socially he was really in there. So and I get teachers that say, oh, my gosh, he has so many friends and all that. I'm like, really? Are they really friends? And that's just that was just one of my high functioning kiddo struggles trying to make sure.
Mary: When did you tell him he had autism? And does he did he disclose that? Does he now?
Amy: We told him and when he was ten years old and we didn't know at first when you first starting a program, you're going to be one of those parents where you're going to, kids not going to be distinguishable. Right. And never have to tell them. I read a book by a kid with Asperger's named Luke Jackson. Do you remember Freaks, Geeks, and Asperger's Syndrome?
Mary: Oh, my gosh. We can link that in the show notes so. So the name of the book is Freaks?
Amy: Freaks, Geeks and Asperger's Syndrome by Luke Jackson. And I read that. And he was he was Asperger's kid, had some siblings that were on the autism spectrum, some that weren't. And it's a great, funny block. And in the back, he has all these idioms which reminded me of Lucas. Like, why do you say that? It doesn't make any sense, but I'll get to that later. But one of the things in that book that he said was he always felt that he was different and he didn't know why. And it bothered him and he couldn't figure it out. He said the best day of his life was when his mother told him about his diagnosis because he was like, well, no wonder, you know? And I and that hit me like that, too. It was like, I don't want my son to run around thinking there's something wrong with me and not realize that he had a diagnosis. So we did. It was very emotional. It was a great story. He was ten. Holly was at the table and Scott and I were talking to him. And I mean, we even got teary. I think we basically the message was you have great strengths and skills. The diagnosis of autism, though, you have some deficits, some things that are harder for you. And I swear, I have. I had tears and we are going to be there for you no matter what. You can always come to us. And we went on and on and we said at the end, Lucas, do you have any questions? Like, yeah, can I get up now?
Amy: I'm balling, it's all emotional and I like that. But I mean, so he so he knew and he doesn't didn't talk about a whole lot, but I wanted him to know that he could always talk to us about it and ask for help if he needs it and that there was no shame in. But that sometimes he would see things differently than his friends, and that was OK. And so he doesn't talk about it with people as far as labeling himself, but he doesn't care that people know. Yeah.
Mary: So, yeah. And you did ask him about being on the podcast and he was fine with it.
Amy: Yes, I sure did.
Mary: Yeah. So and I'm Facebook friends with him and he really does seem very social. And so I know he drives, he lives alone. But he did transition to, was it a college program? Or can you describe that?
Amy: Yes. OK, so Lucas graduated and then he was he took a year at home to kind of decide what he wanted to do. We wanted to get him to work. He got a job at the Kalamazoo Growlers. It's a local baseball field. And he I mean, he was at the concession stand. Great first job. Wasn't yet ready for that. We did have a community college. So he started taking courses there. But his lifelong dream was to go up to Central Michigan University in Mount Pleasant, which is two hours. Fifteen minutes from here. My father taught there for thirty-five years. I got my master's there. My daughter Holly was going to go there. He always wanted to go there. I knew and my husband knew that it was going to be very rigorous academically. We would try to tell him this is not like high school. This is going to be five classes. And he's like, oh, I'm going to go. I'm going to go. And so I said, OK, we're going to we're going to let you experience this dream, which was really hard being two hours away. But my parents were still there. My best friend is there. Holly was there, my daughter.
Amy: So I felt good letting him go and experience it. I wasn't going to kill his dreams, but he got a dorm. He had a friend from school, from his high school. That was his roommate. So that was good. And I kept by the way, I kept telling him we got him signed up for the tutoring at the university, the special education. He can access that. So I was telling him, go to the tutors, you get this with your designation. But I don't think he did. But I got a call midterm's and he said, Mom, can I come home? He said, this is just hard. And I said, absolutely, you can come home. I said, but you need to finish out the semester. I said, if you need to drop a class, that's what he did, drop class. I still to this day, don't know what grades, if any, he got, but I made him stay and do the best he could. And then he came home after that semester and went back to the community college, which is just five miles from here. He ended up getting a coaching certificate from the community college. He didn't get the associates or anything like that.
Amy: But the academic stuff isn't his strength. What is his strength is working, being on time, never missing. Like you would never miss a class, never miss work. And to this day, he can tell you right now he's working in a factory. He's like he'll say I it's my six hundred and twenty eighth day he never misses. So while the academics of higher education were too rigorous and not in his wheelhouse, he's found a niche. And not only has he found that niche, he also loved sports and he does a sports podcast. So he has lots of dreams and and all of that. But he did get to one semester at his college that he really wanted to attend. And I'm glad he got to do it.
Mary: Yeah, that's great. That's great. And I know even parents of kids typically developing kids who might have a learning disability or might not be great at the academics place or want to go to college for whatever reason. And it's like it's so hard as parents to kind of just let them go and let them not do great right now, learn kind of their path. So I admire you for helping him to fulfill that that dream and then helping him to say it's OK to kind of go in a little different direction. I mean, I know lots of kids who, you know, the transfer colleges or drop out or it doesn't make them bad or not smart. It's just it's not for everybody. And I know I did a podcast interview, and I think you listen to it with Kelly and Susie Carpenter, which we can link in the show notes. And she was in a similar situation, like the four-year college or even the two year college just isn't our thing. So she got more into photography and she's working at at another place and it's. The journey is going to be different even if you live on your own or drive. And how long was it until you had him drive?
Amy: He was 17 when he started driving. So it was it was pretty, pretty close to the mark. That boy, that's scary. But both he and my daughter failed the test twice, I think, and then finally got it. But so. Yeah. So that's been that's obviously key. He travels around town, but he also travels up to Mt. Pleasant, which is two and a half hours away, travels to Michigan State because he has friends all over the place. So he does this traveling on his own and he travels he jumps on a on a plane and can go. And he's visiting my sister in Dallas over Memorial Day. He said, Mom, can I get. He's making some money so he can spend it the way he wants. He says, I want to go see my cousins in Dallas and he can hop right on a plane and get there. So it's neat.
Mary: And he lives five miles away from you now. So you're able to to help him and help them navigate and make sure he's doing his checks and wheels and that sort of thing. So what are you what still kind of concerning for you or what are your worries now at this point for him?
Amy: I think and being the social kid that he is and social young adult, the things that young adults do these days going to bars and going to parties on campus and all of that. When his friends are there, he's there as well. So like any other parent, I have nervous when it comes to drinking and drugs and all of that. And we're very open about being safe. And if you are drinking to get an Uber, he knows how to use the Uber. So that's good. But that those types of things are always, in my mind, knowing that he's out and running around one thing and he knows it is that I'm a Snapchat, I'm a Snapchat friend with him. And so he's got that location on so I can pick up my phone at any time. Even if he's gone up to Mt. Pleasant and find where he is. Heaven forbid that we ever lose Snapchat because I love that so that those types of things, he just may be being naive with regards to people that he meets that he might think are friends and have good intentions.
Amy: I worry that they might not and they might take advantage of him and he might not know it. That's always been a concern. So we do our best to talk things through. One of the things he laments these days is, is he wants to have people come over to his mobile home and he's had people come over. He actually has a guest list. He likes people to write in, but he'll say he'll be kind of upset on a weekend. He'll go. No one came. No one's coming over. And I said, no, people have lives. They can't just come over and watch football and party all this stuff. So he's got to get used to that to kind of change gears as far as school and friends and not being social every minute of the day.
Mary: Looking back over the past two decades, any advice that you would give yourself early on?
Amy: Oh, that I would have given myself early on.
Mary: Or you would give to others that are seeing signs the brother-in-law just brought it up there, you know.
Amy: The one thing I tell Lucas all the time, he still has anxiety that's kind of hanging out there. And it's something that I live by is if you have a plan and work a plan, you'll feel better. The anxiety will go away. Soso my advice to someone who's starting to see these things don't turn around and pretend it doesn't exist, get educated and then have a plan and see with your book and a plan to attack this, you seriously feel so much better. I mean, you don't know what the outcome is going to be, but if you wring your hands and, oh, woe is me and you don't just dove in there and do the work and have a plan, you're not going to get anywhere and your child's not going to get anywhere. So don't feel sorry for yourself. You can for a short while, but then pick yourself up, have a plan, expect that plans are always one hundred percent. It doesn't always work out the way that you think it's going to, but you'll feel so much better. And when you're empowered as a parent, you just it's so much better for your child as well. So. So don't be afraid to grab the bull by the horns. And if you don't know what to do, get your get your book, anything to just get going, you'll feel so much better and you'll get results. Whether those be little results or they'll be great big results. It really is. Don't be afraid to the point and paralyzed that you don't do anything because it's your child.
Mary: And you don't know how the outcome is going to turn out, but whatever the outcome is, even if you have a child with severe brain damage and severe genetic problem, they're in a vegetative state. I mean, just you can still have a happy life and, you know, want your child only has one life. You only have one life to. And so you have to put one foot in front of the other and help your child make as much progress as possible. Whatever that looks like in the future, you really have no control over. I mean, it's just as easy that your son might have had intellectual disability or autism and need more much more care. Like my Lucas know we both. When in full tilt, I actually get started earlier in the process because I didn't have to wait for a whole program, I got it together. For quicker, so you would think like, oh, you know, and it's really hard to tell how kids are going to do early on, like I remember the consultant used to come to my house and go over to the boy a mile away his house. And I got to know that mom, through the Autism Society, if you were going to take a look at my Lucas and this little boy down the street at two, three, because they both started at three, three, four, you would have nine people out of ten would have bet on my Lucas to do the best.
Mary: Because the other child was not talking. He had severe feeding problems. He just looked worse. My Lucas went to typical preschool at two. And so you would've bet on my Lucas to do to be higher in terms of functioning and this boy down the street drives, goes to went to college to some kind of junior college at least. And so don't the other piece of advice not to really jump in on your advice, which is awesome, but don't rest on your laurels thinking, oh, they're just so high functioning that I don't really need that, because even if your child can go alone to school and can learn to drive, you know, the ball game is not called. Like it is still a lot of work, right?
Amy: Yes. Now, putting in supports, like I had said, where, where and when you need them and pulling them out when you don't and getting them as independent as possible and obviously as happy as they can be now.
Mary: And so you've already covered safety. So my three things are as safe as possible, as independent as possible and as happy as possible. And that's what we want for all both your daughter and your son, Mike, both my boys, everybody out there, that's my mission. It's not about becoming indistinguishable like it's not is just helping each child reach his or her fullest potential and then takes a lot of work, even if you have a fully conversational child. So you went on to become a BCBA. And we do need to wrap up and you do run a company or own the company. You created it.
Amy: It's called Novel Responses. We provide ABA services in mostly home-based setting until just last year. And we've got two clinics as well, both in Ann Arbor as our main area. And we have a clinic in Kalamazoo as well.
Mary: Nice. So they can go to what's your website?
Mary: OK, so before I let you go, part of my podcast goals are for parents and professionals to be less stressed and lead happier lives. So do you have any self care strategies that you would recommend?
Amy: Oh, interesting. Self-care. Oh, good. Well, yes. I mean, obviously find something you love to do and figure out a way to do it regularly. Put aside some work at times where you feel like you need a break and go take that break. I, my husband and I love to travel. It's different without the kids, but we still love it and we still do it. We have fun together and I've got family around and I try to spend as much time with family do so. Yeah, I mean, put the work down. I mean we do want you to go, go, go. But at some point you have to give time to yourself and make sure that you're doing things that make you happy.
Mary: Yeah. Yeah. Well I think that's great. I enjoyed talking to you today so much. I know we have actually become good friends. We meet at conferences and we haven't seen each other for a few years in person. And covid hasn't helped the situation. But I look forward to in the next year or two resuming our in-person meet ups and also maybe in the future we'll have Lucas on with you or Lucas on by himself. I have had several people on in addition to Kelly Carpenter with autism, I also had Carrie Magro and a few others so we can link those in the show notes to or you can always listeners out there, you can always search Mary, autism, adults' or potty training or driving. I mean, I haven't done anything specifically on driving, but if you search those keywords, it'll come up and you'll find whatever you need to find, because I have video blogs and podcasts for years now and of course, get a hold of my book. You actually don't even have to purchase the book to learn more. You can just go to TurnAutismAround.com, check the book resources, go down. Give me your email address and we will send. PDF, so you'll get to read the first chapter, listen to the second chapter and have all those forms of assessment planning form, you'll be able to take action today. So Turn Autism Around dot com. Thank you so much, Amy, for being here. It's been wonderful to get to know you over the past two decades. And I think our listeners are going to love getting to know our similar journeys that are great.
Amy: Thank you for having me. It's been fun and I miss you.
Mary: OK, well, we'll catch up real soon in person, so. OK. All right. And I'll catch you all who are listening next week.
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