Visiting with our friends at BRAINS we dived into the first part of their program by trying to understand the Diagnostic Criteria and Mind-Body Connection related to Autism.
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Hi, this is Steve. If you're a regular listener of navigating life as we know it, and you visit our Facebook page, you're probably aware that everyone in our household was visited by the COVID-19 virus right before Christmas, I would have preferred Santa's left colon stockings. COVID is a real thing. It's nasty. And although we fortunately did not have severe cases to deal with, I would encourage everyone to mask up take social distancing seriously, and strongly consider vaccination when it becomes available. Get us to want to catch this thing. Meanwhile, I also want to thank you for your patience. It's been a long time since we had a chance to sit down and record an interview and share it with you. In the summer of 2020, y'all remember that summer that didn't really happen. We visited with Dr. Michael Wolf and physical therapist Shawn Cowell at brains in Grand Rapids, Michigan, our discussion was focused on the first episode of their effective parenting series titled the fundamentals of autism. After introducing our guests, we begin with a discussion of the history and diagnostic criteria of autism. Today, we're visiting with brains and neuro psychologist Dr. Michael Wolfe and occupational therapist Sean crabble. About a parent workshop created by brains called putting the pieces together. Our conversation today is based upon the first workshop in the series the fundamentals of autism. Welcome, Shawn. And welcome, Michael. And I really love your mission statement, because it is so inclusive, maximizing potential of families through understanding the complex relationships between body brain and real life. It's not just the person with autism. And it can can Why don't you tell me about your big heart and brain stuff, the bus that sounds like a lot of fun stuff, the bus, we've done this every year with the United Way now for about four years, three, four years is when they started it. And it's an opportunity for us to support our local schools by reaching out, donating to them school supplies, pencils, pens, erasers, paper, backpacks, and things that they need for underserved students going into the schools so that they have the opportunities to have the supplies to do their homework to perform in the classroom environment. Well, you got some great pictures on your website that looks like people are having fun. Dr. Wolf, let me ask you your biography. And I'm looking at the professional biography the personal biography part of it. You said you're from Minnesota. Yep. Did you use speech therapy to lose the accent or what? No.Unknown:
And you'll hear my no right there. Actually, if you catch me talking to my family, yeah, you will hear very strong Minnesotan accent my family Oh, cuz you're begging me to write. Yes. I grew up in Chicago and I had a lot of friends in Wisconsin. You're just like Wisconsin with a Twain because you're farther west. That's right. We've got the northern Minnesota. Right. That's right. Hello, if you're really from Minnesota, we're gonna call it Minnesota, Minnesota. Yeah, right. It's like, well, that's, you know, we have up it's about the same thing. Yes. Yeah. And there's a lot of things you said you like to work with your hands and stuff. And I really appreciate that. It's kind of nice. And you work with your head a lot to get out there and build something. Yes, it is. If you if you grew up in rural Minnesota on a farm, I guess that was expected. That was my expected life was to be a farmer, or at least my hope, but neural psychology came into play somewhere along that line. Well, your plant Another thing is planting ideas. We teased about that, that I have boarding in the American Academy of Pediatrics to psychology. So yeah, word of pseudo psychology. So it's not we we've had some individuals here who didn't understand board certification. And they said, Well, isn't that the guy that's got the suit of psychology because it's a B pdn. apparently didn't know that extra p stood for in there. So we've had to correct some individuals and laugh about that. But if I get the opportunity to use it and say, Well, this is on you guys, because I'm just a pseudo psychologist. But yeah, the next question is, what exactly is neural psychology because people aren't used to the term psychologist but a neuro psychologist. So neuro psychology is a specialization of trying to understand the influences of the brain, and how the brain is functioning, and then how that relates to what we see in everyday behavior activity. So it was originally came out of the rehabilitation model, how does traumatic brain injury and seizures and different influences that we could see happening in the brain that influenced functioning, and it's evolved since then to look at more of the other aspects where there might not be anything functionally wrong with your brain, but it doesn't mean it's always working optimally. And so we can look at now the centers of functioning from general intellect to speech to visual spatial skills, motor abilities. executive functioning attention, concentration and memory, and how do those things that feed into the aspects of functioning in anyone's given day. So it's more like how your body uses that with behavior rather than just psychology. Right? one step further, Shawn, okay, you were born in Nevada, but grew up in Southwest Michigan. That's right. So I missed the mountains. Big time. I missed Lake Tahoe. Yeah, so Nevada was kind of where I grew up. And about the age of 14, I followed my family out here, went through high school here. And then shortly after I joined the service, spent a couple years in the Air Force. And for some stupid reason, I came back home, moved back in with my mom, which was a terrible decision. We have to make some bad ones, right? A good one. Never make that mistake, again, shortly realized that I was going to use my GI bill to go to school and looked at occupational therapy and Western had a really, really top notch program. I was fortunate enough to get in there. And you know, after I graduated, I shortly came across brains. And just like you that the mission statement really spoke to me that mind body connection and helping the families realize the potential of it. And you know, I was told from from the second I read that, and that's kind of how I ended up here it rains. And it says that you were going to school full time and working full time job and also raising a your firstborn child. Yeah. So I don't know if that's cumulation of being stupid or just really good at working. I did the same thing. I was, I was a sophomore in college when I was married and had a child and I was commuting from from palest heights, Illinois, which is down the South a site up to Oak Park for school every day, I went to Concordia river forest, and so like an hour and a half each way, and working. So I'm thinking I know this guy. You know, it was my life right here. It wasn't planned that way. Yeah. My wife was also in school full time, working part time. And it just, you know, it was a blessing in disguise. You know, when it first happened, we thought how are we going to get through this? There's, there's no way we're gonna have to put some life goals on hold. But you know, we just kind of put our head down and kept putting one foot in front of the other. And here we are. Well, you know, it gives you experience and you're certainly not stressed out on chest. Yes. character building. You're right. Decker Wolf, can you tell us what the addm network is enough familiar with that acronym. So it stands for the autism and developmental disability monitoring network that's set up by the Center for Disease Control to start estimating prevalence rates for autism spectrum disorders throughout the United States. So it's a bunch of organizations throughout the United States that are monitoring, not just autism, but Developmental Disabilities also. Good question. So it is a monitoring network. It doesn't necessarily mean it's house organizations, it might be universities, it might be health centers, that are pooling data and sending that to the Center for Disease Control, to figure out what is the census rate, essentially, of autism spectrum disorders from those regions. And so we're looking at some of those regions, places like Minnesota, Wisconsin, Arizona, California. And on the East Coast, we have some in New Jersey, and they're taking about eight centers throughout the nation that have a variety of different types of populations, and trying to see what's happening in those populations with the prevalence rates for autism spectrum disorders. And that's where we get those numbers coming away from, you know, initially back in the late 90s, one in 500, children might have an autistic spectrum disorder, then we move into the, you know, the 2000s, and we're looking at one and 100, maybe one 150 children, and then we're going to move forward to today, seeing that sometimes, you know, for males, you know, maybe as many as one in 51 and 60, or something like that might have some type of autism spectrum disorder that's being diagnosed. So it's from those sites in those regions, that they're able to grab data, and then analyze what's happening and then come up with prevalence rates, okay, like 159 for males could include everything from the highest level of function to the lowest level of function. That is correct. Anyone who has been diagnosed on the spectrum would be included in that prevalence rate. You know, when these different centers are getting information they're getting there from doctors offices, hospitals, are the surgery sites that they believe are going to provide diagnostic accuracy. So they're probably not going to grab as much data from the outpatient physician who may have completed a quick screen like an M chat, and then said, Oh, this must be autism. Instead, they're going to look for the autism specialty centers in those regions, who are using more rigorous diagnostic tools to assess is this an autism spectrum disorder, taking the data from those when we have diagnostic confirmation? Both ruling out other medical factors that might be counting for the answer? The ruling on on factors in developmental disorders, looking at cognitive factors, although that can you can still have an intellectual disability and still be on the spectrum we know. But making sure that it's not better accounted for exclusively by the intellectual disability. But there's In fact, autism symptoms on top of the intellectual disability. So they're pulling it from usually original college centers who have expertise in research grants in autism, who are going to be then fielding the diagnostics as accurately as we can, there must require a heck of a lot of testing to make sure they're getting compatible data from all the different centers, the same kind of diagnosis to know what is similar and what is not. Yeah, so usually, the federal government and National Institute of Mental Health will set battery standards for looking at in terms of diagnostic delineation. And so in this case, they'll usually be obviously the interview with the family, knowing the child's development, they'll be looking at either an autism diagnostic interview plus and some sort of structure testing with the child, maybe the autism diagnostic observation system, or something else that they'll put forth the saying, These are approved measures that can help us look at diagnostic confirmation. haven't been able to tell you, you can sort of one in 501 150. And it keeps getting worse and worse. Is it because of an increase in autism or better diagnostics to diagnose autism cases? So we still don't know. I mean, it's such a dynamic question. We do know that with more awareness of and you know, with the Obama administration, kind of putting forth this idea that we have an epidemic on our hands here with autism spectrum disorders, people started to pay more attention to these symptom profiles. So it might be in part awareness. We also know that there's also motivation behind money and health benefit to the diagnosis of an autism spectrum disorder. If you have a general neurodevelopmental disorder, meaning your child just isn't progressing as you might like them to, and they have delays, that's usually self pain, there's no coverage or there's no benefit for that. But if you are on the spectrum, now the autism spectrum, your church may well pick up that occupational speech therapy, ABA services and different types of coverage benefits that you wouldn't otherwise get. Plus educational systems Now usually have more opportunity for children who are on the spectrum, especially if you're in the monitor to lower functioning side of the spectrum, not the higher edge necessarily, but to say, well, we can have not only them in this classroom, but we also now have these other services yoti, the dg the speech, and inclusion programs and social skills programs. And a lot of kids would benefit from those. But if your child doesn't have an ASD, that is an exclusion, so might be the result of some financial reward. But then we also have to look at what's happening in our culture, we do know that toxicity may have something to do with autism spectrum disorder, we're now moving to more urban centers, where there are things like pollution related factors that can be problematic oxidative stress theories, in terms of how metals and different things might get in could be an influential factor. Lots of our parents are having children later. Now, you know, back in our early history, we may have been looking at, you know, parents who are becoming parents, you know, 1516, and you know, through their early 20s, was normal. Now, we're having individuals maybe not have children, until their mid to late 20s, and sometimes into their 30s. And we do know that, you know, parents who are older, they're having children have a higher risk of those children having an air development disorder, or an autism spectrum disorder, in particular. So maybe that's part of a fact, we'll never find one factor that counts for most of it's going to be a combination of factors, probably it is very heterogeneous, that's for sure. And, yeah, there's going to be multiple complicating factors that are all kind of put in the pot. But we know that even when we put all those kids in the pot, and we say there, this is an autism spectrum disorder pot, each of those children in the pot, sort of very unique and very dynamic and of themselves. And unfortunately, you know, for our higher functioning ASD individuals, they're not as likely to be diagnosed as fast and starting to see them being misdiagnosed with ADHD or bipolar or other things. So they might have gone on a journey that took them down detrimental pathways, it really wasn't beneficial care for them and maybe had some detrimental qualities before. Now they're a little bit older, so we're not catching them as fast. And now they're in their you know, late Elementary, early teen types of years middle school years, sometimes even later, but now they don't trust them because no one's really ever understood. And I can talk and I can communicate that told you this made me feel worse, right? I didn't really like that. But you didn't believe in it because the professionals that this was bipolar. So now I need a medication that made me feel bad or at weight or made me sedate and then I couldn't keep up the work and then I got in trouble for that. And so we see some other additive factors, something times for individuals that aren't diagnosed with nasty until a bit later. But misattribution might have caused mistreatment early. Well, I'm sure you've had some of them here. Lots almost every day, it's easy to see how someone would be mistrusting, nobody listened to him? Absolutely. Because there's three different levels of autism. And I just wondering, like, what is requiring support to require substantial report? Three is very substantial. Is there a 2.75? You know, it seems to me that it's not like, oh, you're crossing over the number two now? Yeah. There's got to be within the spectrum. There's a spectrum. Yes. And within the levels, there's a continuum. Yeah. But you do have to pick a number. And that number is, you know, most like, exactly, it's how do they function most of their time within any given day type of interaction. And so even though you could be 1.35, which would essentially mean most of the time, you're functioning quite well. And you really don't need a lot of support. There just might be things or circumstances that you don't handle very well. But if more often than not, you need more support, you need ot or speech or you need help with your ADLs. Or if you need that help getting on the bus, because you just can't quite figure out how to get on it where to sit. Now there's all these noises? And how do I manage all these noises? Now I have behavior action, you might be a level two. But now that behavioral reaction becomes non hitting other kids are screaming and yelling, and I just can't deal with this at all. And I need a lot of support. And maybe this bus isn't right for me, I need to be on the bus. So there's fewer people, or someone to pick me up individually or drive me to school individually. Well, now we're probably at level three. And so it's where do you function most of time? And it's an estimation of essentially, that goal is in terms of how you're functioning most the time? Are you at level one, level two? Or level three? And it could vary by the environment you happen to be in at the time? Absolutely, yes. Which is why it's, you know, where you have the majority of the time, right, not necessarily just an environment, but in terms of functioning. You know, if you're at home, you might act one way school another way, try to do something after school or at grandma's house or at the store might be not only but what's the most prevalent level that we're seeing. And with that then gets tagged, often what type of treatment might you qualify for. And if you're a level one, insurance might say, well, level ones don't need a VA. So you don't get a VA Yeah, for your level two, or maybe a level three, in order to get a VA. But at level one, you need outpatient counseling, and that's going to be good enough for you. And so the levels do sometimes have some important factor to them in terms of opportunity for insurance coverage for symptomology. I've heard parents talk about that in terms of ABA. Yep, not qualified to qualify, yeah. Because might just be too good. If you're level one at that time that the coalition makes that judgment that says, hey, you're having a good day. And when I've heard for the last couple months, you've been doing great, you know, six months ago, you were probably level two or level three, maybe you should have had a VA back then. But now that you're on a school and you don't have those pressures, and you know, your family's supposed to homeschool you but no one's grading you so it didn't make you really do your homework, and you don't have to put these new clothes on that make you uncomfortable every day. Oh, shoot for the last, you know, three to four months here, your level one. So now the family's like, well, we can't get that help that we were really looking for? Well, right, because now your child is actually being cocoon because of a pandemic here that made them at the time of assessment, everything's going pretty good. But yeah, four or five months later things change, we can see that declining functioning. And then it's usually follow up consultation to say what's happened, is this more of a permanent change, or just something that's happened in a day or with a status could change based upon it can look back later on. I mean, well, it can change for the insurance purposes. Yes, yes, it can change. And that's an important thing that families don't often realize is if we say they're level one, they might think this is they're not permanency. They're high functioning, and everything's fine. But that can change by many different dynamic life factors. And at some point, they may, in fact decline in need for level of support. Question here was how do these three levels affect educational services received? I think we already covered that, to some extent. Yeah. So if your level three, it, you're probably going to be in a categorical placement in autism Imperator and autism spectrum disorder classroom, but maybe some caution or some Gen Ed participation, but it might not be as much because you might not be communicating, you might not really have that interest to advance. You might want all likelihood, if you level three, there's probably some level of intellectual disability that's going to coincide with that if your level two, now the school is going to have a tough time making a decision for you well, too, they might say, Well, yeah, given the fact that they're non compliant, don't really want to do their work, they need some more individualized support. They may also be put in some type of special education environment, that might not be the autism spectrum disorder classroom. It might be resource room support, but they're realizing we can't just keep them in Gen Ed, and in that mainstream classroom, because they're not really going to accomplish very much or maybe cause more disruption for both them and the classroom. So we're gonna do a little bit more have both, but they might not need the AI room. Now, they might be resource room level ones, it can be very difficult for schools to say that they're going to offer them in IEP, an Individualized Education Plan, they might offer them a 504 plan. Or they might say, well, we're going to offer some accommodative sports unofficially and not go through the process of developing a plan, because they're getting, you know, season above, and they're not causing a disruption to the classroom. And they're doing the basics. And so we're just going to let them keep going in Gen Ed, and some of those kids obviously will qualify for any supports, even though we know there's an autism spectrum disorder that has been diagnosed and could benefit from support. But academically, it's not impairing in a way that the school will say they require some type of formal plan, how many people fall through the cracks a time? Yeah, we, a lot of our children, more often than not on that higher functioning edge, which, by the way, there is no scientific definition of what high functioning is, it's an assumption of ability or functioning, that we use that terminology. But if they can, if they can walk, and they can talk, and they can get their grades, and they're generally making the strides along side of things. But problem is with a lot of our individuals that we coin high functioning, when High School ends, a lot of them have exceedingly, an exceedingly difficult time going into college or going into life and getting that job because we haven't had the opportunity to teach them how to function in the world, they can function within the structure of a particular environment. But we see kids so often, you know, they were doing good enough. And you know, everything seemed to be all right. But now the family can't get mother home. And they're addicted to video games, learning disability, either no service of the go along with it. So it's exactly right. And so it becomes very challenging, at that point time to try to backfill skills that they need to launch into life, especially now that they're thinking I'm a tea, you can't tell me what to do anymore. I'm smart enough to know what this means. So I'm gonna do my own thing. And really, a lot of them end up being either hermits or, you know, living with their parents or living in squalor, in some sense. That isn't fair to them, but they can't really meaningfully take care of themselves, because they've never developed those skill sets to do that yet. You had three other points about categories and schools do not base services at diagnosis. Is this functionality. Yes. Okay. So schools, and we know this from lots of diagnoses, many kids can have depression, anxiety, ADHD, learning disability, or an autism spectrum disorder, it's graded on how does that influence you in your academic performance? So even if an outpatient center or hospital or someone has diagnosed Autism Spectrum Disorder, it doesn't mean that they qualify for school sports? It's is this academically influential? And if so, is it something that would benefit from support so that time, so give supports but if they're not making the gains, they should, it there might be a definition line of school might put in place and say, Well, this is maybe kind of that maximum level of gain. And so we're going to titrate those services back. And now this is just kind of where we expect them to perform. So they do have to make progress within the academic environment based off the IEP or, well, particularly the IEP because 504 is not can be that close to the monitor. But yeah, it's not diagnostic driven in schools, they do have to have these criteria, which are usually based on diagnosis. But then there's the additive factor, do those diagnoses and influence what they're doing within the academic arena. Remember, when our son was in school, going through all the IEP s in they had PT OT, and we always thought that was great, but it was really educationally based. And I can see that from your points here to school services, address academic educational skills, not like functioning skills. So basically, the PT was there to make sure you could sit up at the desk, but not to optimize his gait or walking or anything else that was just so he can sit there at the desk, right in his wheelchair at the desk. So I think sometimes parents get a little confused as to what is and what could be a PT or an OT, like showing would really take it much, much further than what they get in the school setting. But we think we're getting something really great in the schools. And it's, you know, freely accessible if they're offered in school. So if no copay, there's no deductible. And we assume if it's called OT, or if it's called speech, that's what they would do in the outpatient world. But yes, just like your points, if that is far from the truth, and in fact, I had a conversation with a family this morning, they have a seven year old child who has an autism spectrum disorder and seizures, and the kid can write his name and seven, it looks like I might see a preschool write their name. And right before the pandemic had hit in schools closed, his occupational therapy services were discontinued because now he was able to write his name, don't we think of it at seven, you shouldn't be able to just write your name, you should be able to do your spelling words, impossibly take some early notes and start to organize your math and and do so much more than that. But in this case, that was the apparent definition that that particular school used to say, Well, if you can do this, then we can assume that there's these are things you can do but when we tested it still couldn't do it fluently, still couldn't manipulate to even drop basic shapes in a clear manner, even a circle was partially unrecognizable as a circle. But yeah, for training through enough time, the basic letters of his name are fine. When I tried to say can you just write all the letters, the alphabet, I don't care if they're capital or lowercase, I would probably say over 55% or more, I think I estimate that 70% actually were unrecognizable letters. So I'm telling the family, you need o t, but you're going to have to go to an outpatient service center for that, because the school has made that determination now we can still read petition and review that IEP with the school, but that's going to take time. And all the while these things are going to affect play skills and throwing in other types of fine motor coordination, that your kid will avoid using silverware, helping with the dishes, doing particular types of chores, because these time are difficulties, but the school is not going to really pay as much attention to those tall because they're looking at what's needed for academic functioning, which I think is important for listeners to realize, because if you're like me, we're in thought, well, he is getting OT and PT Yes, and there's nothing wrong with the limitations of what they're doing there. Yeah, and there's particular boundaries and jobs, and that each person kind of has, and like you just mentioned, you know, the OT at the school. It's not that they're bad onto you're a bad speech. They're well trained professionals, but they have to work within the guidelines of the profession that they're doing in that work environment. And so their goals are going to be fundamentally different than the goals of what you're doing now patient, it's an important point to understand. Thank you for tuning in to navigating life as we know it. This is Alex, your producer and occasional long distance communications officer here with your mid break announcements. First off, thank you so much for your patience during the recovery period. Fortunately, it seems that most of us have come out of this virtually unstable. So that's a victory there. But as Steve said, In the beginning, this is still a pretty nasty thing. So if you have been able to avoid things thus far, keep up the good work, we will be doing a few more visits with brains, and we'll have more information from them as time goes on. They have a wonderful program there. And if you'd like to know more about it, please tune into our website or our Facebook page, we will be posting information there. Lastly, we have a new program we are developing here at navigating life as we know it, it's something we're calling our stage two episodes, and the first one to come out will be split into two and it will be airing on the 17th and 24th of February. What it is, is a discussion with social security trying to understand the program and some of the myths that need to be debunked about it. We will be doing more episodes like this in the future. But the catalyst for these episodes is you our listeners giving us feedback about what you want us to find out for you. So please take a moment and join our Facebook community. Hop on to our page and see what's new. And if you're feeling like it, you can join our web page or sign up on Patreon to help support the show. Thank you for your time, have a wonderful listening experience. Welcome back. Now we move on to overcoming barriers within the family dynamic and it starts out with the mind body connection. And I just wanted to read one quote from your presentation your the brain and peripheral nervous system, the endocrine and immune system. Indeed all the organs of our body and all the emotional responses we have share common chemical and electrical language that are constantly communicating with one another. That explains the term hangry, doesn't it? It says ASD individuals tend to have sensitivities in the mind body interaction system. Could you explain how they work? Yeah, so we know that their brains are wired a little differently, right some some things go a little bit faster, some things go a little bit slower. Some things don't really register, or some things register a lot. And specifically in a couple different areas. So sensory processing is kind of the big one. We know digestion is a huge challenge for a lot of families. Muscle when we talk about like tone, and our ability for our body to be prepared for movement. And then sleep Sleep is that that real big one that a lot of kiddos struggle with? That one's most important when we talk about recovering and processing everything that goes through the day, and kind of storing us up away to us. And I think it kind of goes back to our two different nervous systems. We have our sympathetic nervous system. That's kind of the fight or flight as everybody knows it. That's when we're in stress. Our sympathetic nervous system is gone. And then the opposite you have your parasympathetic nervous system, and that's responsible for things like digestion, relaxation. We know kiddos who have autism tend to stay in that sympathetic state a little bit more. And if you think about trying to go to sleep when you're stressed, it doesn't work. And if you do fall asleep, you're probably waking up shortly after, whether it's your brain just kind of just won't settle down, or the body just wants to move. Because we're in that state of stress, no, it really does inhibit our ability to sleep. But it's tough to know exactly why. And with some of these kiddos, they can't really explain what they're feeling. And so as a clinician, a lot of problem solving there, especially with parents, you know, they're the ones, I don't get to see them sleep. And so when we're trying to remediate sleep or increase it, parents are huge. Because I can't always be there, I don't always know what's going on. And it, the other challenge to that is, is, a lot of times parents don't have the skill guys that myself or another clinician might have, and so they might miss something that otherwise would be a big hit for me and an answer to something. But yeah, sleep, it's just so important. You know, those kids don't, it could be hard to identify something that might have happened at two o'clock in the afternoon. It's affecting sleep now. Because the parents might not have been there either. And so we talked about antecedents, I love our ABA team, you know, they're really good at recognizing what happens before, you know, a meltdown, or whatever, whatever kind of behavior we're looking at the antecedents are so hard to pay attention to and to know, because like you said, it could be a couple hours earlier that caused this reaction that lower abs. And I'll jump into Sure, you know, having the opportunity to have ot naa here, but also some things that we commonly overlook when we're thinking about ASD children. Sometimes they need that weighted blanket because they're looking for some compression or appropriate haptic feedback. Sometimes blankets are uncomfortable, or again, the too hot or too cold within their sleep. A lot of our ASD children also, even shortly after birth, struggled to monitor manage their own circadian rhythms. And so they, you know, might want to lay closer parents and a lot of them might sleep with their parents for longer periods of time, too. But then they rely on that adult as kind of their rhythm. And then when we try to move them into that bed themselves, that can take a long time to grab ahold of some of the research even done at Helen Voss Children's Hospital. Sometimes children's, you know, young is seven or eight. If they're not moving into their own rhythms and their own sleep cycles and silver lying on adults or sleeping with their parents or not being in their room, it might be a long, lifelong problem for them, to develop over them. But it's just so much easier, especially for some of our neuro developmentally challenged children. Just let them sleep with you and to have that time to develop. And then of course, their fixations, you know, they might be thinking as I'm going to bed, can't wait to get back to Minecraft The next day, and I can't. And so now we also have forward thinking as well as backward thinking about what this was. And then a lot of our children talking about digestion. Like Shawn mentioned, a lot of serotonin is produced through the natural digestion of food. In fact, maybe 90% or more of serotonin comes into that. And serotonin is important to calm that body. So depending on how they eat, and what they've eaten restrictive food diets and things like that. They might not get that comforting feeling from serotonin, which might say, Hey, you know, we're not ready to relax, our body's still feeling a bit uncomfortable, which isn't going to send the message to the brain and say, Hey, pineal body up there, it's time to kick into melatonin, we need to settle in and relax. And that also doesn't happen. And then, of course, any noises, you walk by the hall, the floor creeks are different lions, we have so many different dynamics happening with ASD individuals, that a sleep study might say everything's normal. But we still have alerting and awaking factors that might come from other physiological mechanisms. the sympathetic nervous system also can result in the higher heart rate or respiratory rates, all kinds of things that could have long term health effects also correct? Absolutely, yeah, we got blood pressure, we don't get a lot that stain up to that has really, really drastic effects on us as we get a little bit older. Heart rate to it heart is a muscle and the more we use it, the stronger it gets, the thicker it gets. And we know that can cause issues later on in life. And the next thing here, there was a pyramid of learning central nervous system. And that, again, is a visual, we have this slide presentation posted on our website. So you can hopefully take a look at that and get a good visual of what we're trying to describe verbally here. But could one of you explain the pyramid of learning? Yeah, so it's got a couple different names. You might also come across as the Pyramid of velopment. This is some work done by Taylor and troughs. They started out as occupational therapists I believe they went on to do some neuro psychology work and things like that. But the way it's kind of set up is in that pyramid fashion. So we have our foundation and our foundation is sensation and so We're looking at a couple different things we're talking about taste, smell, sight, hearing, proprioception, touch. And that's really how our body starts, right? When we come out of the womb, our whole life is sensory, you know, that's non negotiable. That's that's how we learn. That's how we interact. And as we come out, you know, we're just this little malleable piece of plastic, you know, we talk about that plasticity in the brain. And sensory is what really drives that. And so that's that foundation of that pyramid. As we go up, we start talking a little bit more about like motor, sensory motor awareness of our body motor planning, motor planning is a big one for me, as an occupational therapist, the ability to conceptualize what we need to do to perform a given task, we started talking about, like reflexes, we know that reflexes are really important in the development. And then above that sensory motor, we start talking about perceptual skills. So our ability to maintain our position in space, our posture, we know a lot of kiddos with autism have really poor posture, they maintain this forward flexed position, curvature of the spine is really grounded, you know, they really have a hard time sitting up. And that kind of comes back to their tone also. And then that last piece of the development, pyramid is cognition and intellect. And so that's, you know, that's where we really start seeing the deficits and kiddos who might have autism with their ability to learn their behaviors and their performance and what we call ADLs activities of daily living. And that's where people really start picking up on them. We know diagnosis happens about two and a half, three years old. And that's because we start seeing some of those behavioral issues at the top of the pyramid. And then as an occupational therapist, my job is to kind of figure out, you know, I can I can look at this pyramid and say, Hey, I think we're missing a block in the foundation. And a lot of times it comes back to the sensory component, Dr. Wolf talked a little bit about how it might affect sleep, right, the touch the weighted blanket, things like that. And so my job is just to try to make sure that we have that foundation. And we look at these kiddos and try to fix things from a bottom up, you know, so I can I can plug in that foundation, fix it, and hopefully that helps improve performance. And it helps a great deal when you're when somebody has verbal skills. Yeah, yeah, you know that that? I do it if you don't have the verbal skills, my son doesn't speak really, maybe a word or two. And you can Dr. Wolf, jump in when you want. Yeah, so that that definitely complicates things, right. But we also communicate through different ways, right, we can communicate through touch, we know that when someone isn't feeling safe, and they're around someone who they trust, they might want a hug, right? And so there are other ways our body communicates with us whether it's eye contact, postural, gesturing, things like that, but the ability to speak does make my life a little bit easier. I don't know if you have anything you want to add there. Yeah. So a lot of times, we have to really convince the parents that you are still our experts, your eyes, your ears. So even if you don't have language that's in an act of useful state, we can ask them, you know, what types of non verbals have individual uses? Are they typically pulling or guiding? Are they pointing? When you point something, are they looking at options and giving you any nonverbals in terms of a smile, or in terms of a head nod, or anything that can help us to convey what they may be interested in. Or if we don't have some of those meaningful cues, sometimes the families will give us a sense of Okay, so here's how we typically say start to get frustrated, here's what we know, they will respond favorably to here's what we know will typically cause them more frustration, because they've had that trial and error learning, our job will be to keep advancing that individual to push him up against areas where they might get frustrated. And, you know, they're putting up kind of a developmental block or going to use a skill to try to make it easier for them to get over that block. Whether it's a language or sensory sensory motor activities of daily living, like we look at very actively in occupational therapy, to move into that place that feels uncomfortable, but to do so without either shutting down becoming aggressive or becoming clear. The balancing here is we call that finding the just right challenge, that just Rachel just right challenge, which is not easy to find a lot of times because I just experienced as a parent or son would give us some of the nonverbal communications that he wouldn't for you. And that's where the parents become our experts. A lot of times they're looking at us saying, well, you guys are the experts on working with neurodevelopmental disorders that is part of that family system. And for us to hopefully have the opportunity to intervene and help and guide a little bit faster. We need the experts that are coming in, which is usually the parents who are helping that guiding at first, but lots of times once the children then start to find that comfort zone clinically in the space that they're in here. Next thing you know, they might be grabbing your hand and going off with you and the parents like okay, well, I guess we'll see in a little bit then. You cross the bridge. Those are fun days. I bet. But what else can you tell us about the couple slides? You hit on sensory processing disorder? Yeah, so it was development. Yeah, so sensory processing disorder. And Dr. Wolf can speak a little bit to this. So it's not necessarily a recognized medical diagnosis, meaning you can come to me for a sensory processing disorder and I can bill your insurance for it, you know, we're still not, it's more a subset of symptoms that falls under ASD. And so that challenge, they're diagnosing it, a lot of times, it's going to be an occupational therapist, who might say, Hey, I'm noticing some deficits and sensory processing, we might have a disorder here. But when we talk specifically about that, we kind of have an umbrella of some different ways that sensory processing disorder can go. The first one is a sensory modulation disorder. And the easiest way to think about it is the processing, that's when things come through the brain, the modulation is when our brain digests it, and then figures out what we need to do with it. And we see sensory modulation disorder come out a couple different ways a child can be over responsive, meaning sensory stimulation comes in and they freak out, or they overreact, we see a lot of under response activity responsivity, where that comes in, and it just doesn't really register, they don't notice it. And you know, that can be really important for survival, right, we use our eyes to find things in our environment that might be scary, or even with tastes, we were divided into something that might be moldy, or spoil, you know, our body's gonna alert us and we're gonna spit that food out someone who's unresponsive, they might, they might not get that. And so it can be super important in a couple different areas. And then that last piece for sensory modulation is the craving, or the seeking, which we see a lot. And we can see that craving and seeking towards specific stimuli. So a lot of times I have kiddos who are very proprioceptive, seeking, meaning they want big movements, they like crashing into things, they like jumping, they like that input into the joints, our joints have receptors in them that kind of help us tell our body where we are in, in space. And so that crashing is just a real big heavy input. I have a big crash pad in the gym, I would say nine, nine out of 10 kids, the very first thing they do when they come into my room is they take off running and they jump right into that crash pad. And so you know, that's that's a slight example of them seeking or craving that input. Good. They could be future NFL players, right? Yeah, they get really good at Yeah, absolutely. And then it kind of tears off into another, another area. And we call that sensory based motor disorder that's going to kind of display in their posture. So you know, they might have the head kink to the side all the time, they might be forward flexed, they really have a hard time, their brain has a hard time telling where they are in space. And then the other part of that, and we see this pretty often is dyspraxia. So just kind of a loss of ability to do a movement, that one's pretty common. And then we have sensory discrimination disorder. And this one's a little trickier. And it comes out a bunch of different ways. But for example, like for us sitting in here, if we were to hear a loud noise, I'm sure all of us could kind of point to where that noise was coming from, whether it's behind us, in front of us below us, someone who might have a discrimination disorder for auditory processing, you know, they might hear the noise, but they won't be able to tell us if it was very loud, where it was coming from their body can discriminate against, you know, things like strength and things like that, when it comes system. No, none of these can actually be cured, that could be treated, or you can alter the environment around them in order to give them something they can function with. Yeah, right. I mean, there's there's very little cure going on here. But we can help the brain process things a little more efficiently. I love that you mentioned modifying the environment. You know, that's, that's typically my first go to, especially with parents in the home. You know, that's what we have the most control over as parents is modifying the environment. If things are too bright, we can turn lights down, we can pull shades, if things are too warm or too hot, we can turn on the AC or fan. And so I love that you mentioned that that's that's really important when it comes to trying to compensate for sensory processing. A while back I saw a video on the internet about is some British company I guess made this about a child with autism at the mall and the mom is using the ATM machine Did you see that? You're seeing the world through the child's eyes. And all of a sudden it gets really bright. Somebody dropped something he does a lot of crashing noise. And mom's talking to him and all he can hear is bla bla bla bla bla sees lips move because he's focusing over here. And all these senses are coming at a different rate in different volume from all over the place. And then he kind of freaks out and the next thing you see it's black and he opens his eyes and his mother's in front of calm down. Yeah, I've always wanted to live a day in my my son's mind to see what he's seeing and understand what he's processing and dealing with. And that comes closest to it to be able to see like that it'd be great if we had a virtual reality experience that people could put the helmet on. It's so much easier to understand that point how to change the environment or how to respond to different stimuli that's coming in. When we talk. We talk a lot about perception with my families because I can't I can't ultimately know How that child is perceiving things. You know, I'm like you said, I'm not in their brain, I don't know. And so perception is real for each individual. And I think that's also important to kind of keep in the back of my mind, when I'm challenging kiddos, and you know, they look uncomfortable, or they really struggle, sometimes I have to take a step back and realize like this probably a little too much, because I don't understand, I don't have the same perception that they do. And so I would love to see that that commercial, I'll send you the link, I'll find it and I'll send it to you because it's really amazing. There is another couple of things here that follow that slide. There's one independence in the deals and occupations, maybe I'm skipping a bit further ahead, here we had gross motor and fine motor and visual, yeah, when it comes to motor skills. As occupational therapist that's that's kind of my my niche, gross motor skills, fine motor skills, they're all important for for movement and engagement and what we call those abs. gross motor, you know, that's, that's more ability to move our body through space, jump wrong, things like that balance. And then we have fine motor skills, those are, you know, our ability to manipulate things with our hands and writing, putting little things together, we do see deficits in both those areas are pretty common for kiddos with autism to have difficulties there. And that kind of comes back to things like the tone, the attention, getting these kids to learn these things isn't always the easiest, I have to be pretty creative, and how I set up a lot of my treatment sessions, when it comes to gross motor skills. You know, I think that's the most important thing for their their main occupation. And that's play. Right, right, we know through the age of seven plays is the most impactful thing we can have on the brain. And the most, it's going to be the most positive impact on the brain, we cannot talk about that plasticity, that's what's going to help drive all those neural connections, you know, those good ones that we want is play. And so I want kids to be able to access their environment, especially when they're in school on the playground or monkey bars, I want them to be able to climb up ladders, and go down slides because it's so important for their development. And it's also important for them to interact similar to their peers, their neurotypical peers, a lot of times at recess, kiddos are getting left inside, not not getting that interaction and that movement they need or they're being singled out, you know, they might be last pick for activities outside. And so I really, that's what I kind of pride myself on is helping them interact a little bit longer environment through those gross motor skills. Yes, we did kind of skip over the motor skill development. We talked a little bit about milestones you probably talked about it with, with pediatricians. And there's a reason why, you know, we're tracking things, they really drive our movement, reflexes are things that happen automatically, we have a couple different ones pretty common one that that most people understand is routing. So if you take a baby and you kind of stroke the side of their cheek, they're gonna turn their head that way. No, that's really important for breastfeeding, bottle feeding, it starts associating those two reactions, if someone touches my, my cheek, I'm gonna turn my head that way, then we start developing a little bit of hand eye coordination through that way, we have reflexes that help us develop our rolling over our crawling. And we know when those reflexes Don't go away, we can achieve those higher level movements, those gross motor and fine motor skills. And so some of the things we can do some reflex integration, we can move those move kiddos through those, those patterns that they need to kind of help organize their brain so they can pick up on those higher level skills. I think it's it's most important for parents to kind of educate themselves on that. And for my younger kiddos, we definitely talk a lot about that. Just trying to figure out, you know, was crawling late was walking late. That tells me a lot about their coordination. I know if a kiddo like my own son, he skipped skipped Chrome. He started walking about 11 months. And when I look at his move retriever, yeah, well, and it wasn't what he should have done. I our bodies are designed to crawl before we walk. And so when I look at his movement, he's not really coordinated. I don't think he's gonna make it into the NFL. I don't think he's gonna be a varsity athlete. I think he's gonna be more madly, super intelligent. But I look at that, and I wish I would have done more for my son at that point on going through college and things like that, you know, I feel like I miss out there. But there's a reason why those things are talked about with pediatricians. Perhaps you should have a whole teaching thing on parental guilt about all the things we should have done and didn't do that. We beat ourselves up for like that. Just let it go. No. Welcome back to the M Locky chat cafe. I'm Carrie, your podcast co host and head barista at the cafe. Our discussion today is centered on the first episode in a three part effective parenting series presented by brains in Grand Rapids, Michigan. Steve's here now so let's get right to it. Steve, where do you want to begin? Well, oddly enough, I want to begin at the end there. There's one section that we did not cover in the interview. And it's overcoming barriers within the family dynamics. And I thought we take that from experience that we have had raising our own son, because a lot of these seem to be fit very well with some of experiences we've had with Liam, there's three areas, basically, autism spectrum disorder has an impact on the various aspects of family life, which are primarily daily life covers everything, relationships, and finances, employment, that's pretty much all of it, I can't think of a whole lot other than that, there's sleep. And actually, it affects that too. But anyway, the first one is tips to reduce the stress of daily living skills. And again, I think we have a wealth of experience, although every family's going to be different depends upon where their child is in the spectrum and any other developmental disabilities also, but the first thing they recommend is create a consistent routine. And that's kind of easy to understand, because with autism routines are something that people on the spectrum feel some comfort in, correct. Sometimes when life is very hectic, and we're heading in a different direction, every minute, it's hard to see what the routine is. And that's a particular challenge that I have. And I think it's even more difficult when you have a child who is really more comfortable with routine. But routine is kind of sometimes a luxury for us, you know, we do we do most routine. But sometimes, that's not always easy to do, or something comes up and we have to have more flexibility than Liam would like. And that's where we try to then bear in mind how that affects him. And then that also has an impact on how long we can continue to do whatever this new situation is. And you know, we try to not nag. You know, it's difficult because it's not a it's not a matter of giving in to him. It's a matter of honoring. He's reached maximum capacity. I think most parents understand when the kids have hit the red line. Yes. Other people don't get that, but not not with somebody else's kid. No. But we have that relationship. So we know when he's starting to hit danger area. Yes. And I think most parents can understand that through some antecedent behavior. Right? Right. So consistent routine is great. I like this next one, it's break the tasks down into small steps. And and an excellent example of of where we did that was going through the steps to get Liam to brush his teeth. Without us standing there and saying the whole thing, you took pictures of each step. And you we have taped them to the bottom of his mirror so he can see them. And it's exactly the steps that need to take place for him to go from the beginning to the end of brushing his teeth. It's in terms of weight, patience, I think it works 70 to 80% of the time, but sometimes you starts picking up the last thing first, and it makes it a lot more difficult to go through the process. Let's see, that's where you then because we've used the visuals. And that's where you go to the modeling, right? prompting and practice. Actually, the last couple of times, when we finished with when I have finished showering him and I've said, Liam, it's time to brush your teeth, he has gone right over to the sink, and started now he doesn't always start with the paper cup, because he uses a paper cup to rinse his mouth. And he uses a ceramic cup to clean the sink and wet his toothbrush. So he fills two cups with water. And he stopped sometimes he starts with the paper one, sometimes he starts with the ceramic one, I don't care as long as we get through the various steps. But it's great having the visual because all I do is I just kind of point point, right, and he'll attend and then move on. So it's great. And actually, in terms of helping model, it's really nice to break the steps down, because then that helps me figure out what's the best place to model and then scaffold. I love that that phrase that we got picked up in one of our therapies was, so I'm just gonna provide the platform for him to do the job. I like that. And again, the small steps can apply to everything is not just brushing teeth, it could be many, many different things. And make it as simple as possible. Sometimes for some individuals, you might have to have 14 or 15 different steps. And actually, in subsequent episodes of this interview with brains we talk about the next one is effective parenting for kids from age zero to 10. In quite often. And in that process too. They talk about training, how to get things done in breaking it down and take the cap off the toothpaste blah, blah, blah. It can be very, very detailed. But it shouldn't be more detailed than it needs to be right but the small steps makes it work a lot better. Right and then that All helps work towards independence in a specific area, right? I mean, you know, when we talked about this, it was like, okay, we want him to do all the bathroom stuff as independently as he can, we can't just start with that whole room. So we have to start with a thing, one, one piece. And so we started with brushing the teeth. And then we also added, washing your hands after using the toilet. And, you know, now he's gotten to the point where I'll say, Liam, what do you do now? Once he's, he's back in his wheelchair. What do you do? Now? Liam is kind of turning control over to him. It is. But it's also remember our steps, we did the steps enough times to say, Okay, now you're done using the toilet, you need to wash your hands. Okay, let's go wash our hands now. And yeah, and so we did that. And we did the steps. And we did the modeling of scaffolding. Now, all I have to say is, Liam, what do you do now? Wash my hand, and I walk out of the room and he washes his hands. That's exactly the way it should be. Because when they get some kind of independence in a specific area, they're demonstrating expertise. That's got to feel good. Oh, absolutely. It's got to feel good, because we're not in his back anymore about it, he can do this, he can do it by himself. And we've noticed that over the years, how he's picked up certain skills, and we just let them do it. If it isn't exactly the way I'd want to have it done, it's still getting done. Right. And that's where you just kind of back off, right? It'd be happy about it. That's part of the grace, we talked a little bit later, right. Next, I think a really good piece here, especially at the beginning of the training process and the consistent routines as you need to provide breaks and calming strategies before you get to the problem behavior, you know, when you see that, that he's already getting agitated, about filling the cops, and let's get the calming behavior, let's let's have that that strategy built into our process of training him. So we don't get the big ol meltdown. In the interest of True Confessions, I have to admit that sometimes the calming strategies for mom and dad, I have noticed over the years, how Liam leamas behavior kind of depends upon my attitude and my level of stress he can he's very perceptive. And I think most kids are extremely perceptive. And they can tell when you're having a bad day, or you're even if you've got a smile on your face. That's not the vibe you're sending off. And so sometimes that providing breaks and calming strategies, is a matter of like, I see my son starting to read line, or, you know what, I've got to take a couple deep breaths, relax and re approach and do it calmly and slowly, and then you get better results out of it. Now, the next one is support advocacy. And I think we have to be advocates. But we also have to see where somebody else is supporting advocacy on a particular issue, getting behind the right causes and the right people. And I love celebrating small victories, which is number seven, it's nice to be recognized for doing something. And we have to assume that no matter how verbal or engaged our child might be, if you're celebrating their achievement on something that is one way to reduce stress. Yep. And the next area was tips to reduce the stress on relationships is if there's any stress and relationships in a family, with a child with ASD, create positive interactions with all family members by pairing and what that basically means is this. Our youngest child, our producer, Alex, when he was around four or five years old, naturally became a little bit jealous of the attention that Liam got Liam was using a wheelchair, Liam got more attention. And Alex a couple times would sit and Liam his wheelchair and say, I wish I had cerebral palsy. Now it's not that we are ignoring him, those are natural jealousies, because of the amount of behavior and bought up attention is paid to one child over another. But even on that attention was therapy. Right like exercise, he was really enjoying himself that it was just like kicking him out for ice cream and leaving Liam Alex at home, it doesn't matter. Sometimes, that extra attention has to be paid. In pairing sometimes meet might be dad and daughter go out for lunch. Or maybe mom and son do something the the child without the disability is getting special attention also that helps in relationships, right then a developing appropriate scripts and routines, social scripts, social scripts, you know, there are I'm very aware of the fact that there are things that you will do with Liam that are very different than what I do. We try to be consistent with that. But sometimes we're not using the same script for appropriate social behaviors and we're not following the same routines. And I want to say over and over again it is just give yourself some grace. You're gonna fail at this stuff. You know, it's none of us are perfect. Okay, so there's always a reason Set button. And you can always give yourself a little grace. And we'll try it again. And I know there's times that I've seen you do something with Liam that I'm not normally involved with in or I do differently. And I say, wow, that works really well, I'm going to change what I do. And now all of a sudden, our scripts became more common, and routines become more common, the more you can do that, the better the results, you'll get set boundaries and expectations for behaviors. I think that's really important that we have boundaries and expectations. Oh, sure. Yeah, that they're commonly held with exactly, I mean, one of our bugaboos with Mr. Liam is that he will sometimes come to the dinner table quite willingly. And sometimes he decides to basically have a bloody fit at the table. And while I will allow very many things to go on, I will not allow him to sit there and scream at me at the table or just scream at the table. So that's where we've said, No, no, if you want to sit at the table, and have dinner with us, you can't yell, if you're going to yell, go in your room, he has gone in his room and slammed his door. I think that's exceedingly appropriate. Well, it's something we'd like him to grow out of. But, but it's appropriate, he's angry about something, and he is expressing it. It's not always about dinner, either. Because the amazing thing is, Sometimes he'll go away indignantly screaming, and then come back five minutes later, and he's hungry. And it's like, okay, now it's on my terms, I'm joining you at the table. So I think that's part of it. One of his, uh, we, we asked him to come to the table. And the other one is, he decides to come to the table, right? But we've said you can't come here with that behavior are that that attitude is the boundary. And that's our boundary. And he does it with that he really does. But you know, again, that works well, with dinner, you have to look at the function that's, that's happening. And then figure out the skill that you're going to teach. And then you have to provide reinforcements. And I and I like your you haven't done a note here that you provide a reinforcement, not a bribe, and tell me that, yeah, the reinforcement, not a bribe. When I listened to I participated in this presentation that the brains did before we did the recording, obviously, they came up with that idea. And all of a sudden, I realized when I was bribing, and when I was reinforcing. And reinforcing would be like, for Liam, if it's a matter of him having television time, after we have lunch or something like that. I say, Liam, let's have lunch right now. And then I'll put the remote control down, he says, and then you get this, okay? Now, that's a reinforcement. It's a bribe. If he's having a holy fit about eating lunch, and I said, if you calm down, then you can have some TV, because what we're telling them is, if I want TV, pitch fit, and then they'll give me a bribe. So and, you know, that is lost on me initially, but now I see it's very, very effective, because he complies with the request. Okay, we're going to have lunch now. And then you can have this in watch Tim TV. And I have to give him the remote because just saying you can watch TV doesn't do it. When he sees the remote. That's a reality. Yeah. Well, and that's part of his total communication. Right. So I think, you know, the not no bribe, but reinforced, I think is a very great way to reduce stress and relationships, I have seen a noticeable difference and when taking that strategy with him. Right, right. Very good. Ben, what skills are taught follow through, don't let up on it. We know we still say Liam, it's time to brush teeth. And we still watch the procedure is using hopefully become a day when he'll just do that without being prompted by but it hasn't happened yet. It's getting better with the washing the hands. So let's see. Yes, you know, it's, it's all a goal. That's all it's only been a year and a half with the teeth. And he's only 32. So we'll get there. The next one tips to reduce the stress of transitions. Oh, again, this is effective for all people utilize resources and ask questions. Sometimes we think that gv asking a question, you might appear to be stupid, hey, I don't mind if people think that I'm stupid, as long as I'm getting the right answers, and it helps me that's fine. Put the ego aside. You know, utilize the resources that are available, seek them out, especially when you know there's a transition coming up. And maybe it's puberty or maybe it's moving from one school to another, find out what your resources are ask questions and get advice. And then the second one was advocate advocate advocate, not stuttering. They're basically that advocating is always saying what's best for my child? Where do I find the answers? How do we do this? How do I get what I need and then sharing that information with other parents too, because that's how we accumulate a body of of intelligence about different issues. By sharing things that work and things that don't work, and sharing the resources, where did you find that out? Oh, I went to brains. You know, that's boy, I don't pick a dentist out without getting a referral from somebody, when it comes to our kids, when it comes to advocating, it's great to ask, right? And sometimes it's a matter of actually going in and walking the terrain, that's going to be the next move to Yes. That kind of falls under a little bit of the except help. Part of it is it you know, you're talking about walking the train going through the school, we may as parents have a better idea of what is going to work and what is going to be challenging in terms of a new routine. Yeah. And walking through that. literally walking through and seeing maybe spending a day there when school is in session, if it's possible, gives us an idea of how our child is going to adapt to something in what might be problematic area. Right? So I think that's really, really good. It's important, except help. God is at heart sometimes. Sometimes it is. Yeah, I know, some parents are at the breaking point. And he almost have to restrain them and say, take a break. But they think, well, self care is selfish. And I always maintain self care is refueling your tank. Because of when you run out of gas, and you start getting testy and emotionally drawn, you're not doing anybody any good. You're not being a good mom, you're not being a good dad, right? You're not being a good husband, or a spouse or a partner. At that point. You're not good for anybody really. So you got to take breaks and accepting help is part of that. Yep. You can't do it all yourself. You don't get any rewards or any medals for that? No, no, I The other thing, a piece about that is I had an instance where I was loading Liam into the, into the car. And first I of course, I would put the child in there. And then I would put the wheelchair in, in the back of the vehicle. And I gentlemen was walking by as I was getting ready to do that. And he said, Oh, well, can I help you with? Can I do that for you? And you know what, quite honestly, I know that I could do it. I do it all the time. I do it 10 1520 times a day. You know, it doesn't really take me that long. I've got a routine. But I heeded the advice and I accepted the help. Now, it took him a lot longer than it would have taken me to load that wheelchair into my car. But what I saw was, there were two things that occurred there. You know, first of all, I got a break from doing it. Okay. But the second piece of it was, you know, when he finally got it in there, and I we arranged and everything he's like, wow, that was a lot harder than I thought it was gonna be. Oh, yes, yes. That's why we have handicap spots. Yes. And you know, so I thought, okay, so I have now helped in this man's education. The next time he sees somebody doing this, he might be intimidated to offer help, but he will acknowledge that, that is quite a task that they're doing, flawlessly, effortlessly. Like that. So I think one of the definitions of grace is accepting help when you don't necessarily need it. But somebody else needs to offer help, because not for ablest reasons. But you're giving it more as they really are. Yeah, if you can afford the time, but if somebody really wants to help, maybe that day, they just feel that they need to do something for somebody. Yeah. But you know, now you're getting into a little bit of the conversation that we had with Beth Heller, yes. And I'm saying not ablest. He asked you, he says, may I help you with that? Yes. And sometimes maybe he just felt that he had to help somebody today, because it also helps him. Grace is actually accepting help or accepting advice that wasn't solicited, but you know that it's beneficial for the other person to be able to do that. And it's educational, not that it's our responsibility to educate the world. But it's something that sometimes we have to do, right. So number four is plan early and often. Yes, for your transition. It's because sometimes some the first plan doesn't work, or you have to amend it. The plan, this is plan 2.475. Because number two, it didn't work. So we just have to do it again. But really, I've the standard joke I have with people is yes, we can live spontaneously as long as we have a two week advance notice. Right. And I think that's true with anybody that has an individual in their family with a special need. That requires special circumstances. The spontaneity is not it's not something in our orbit. We don't even recognize that. It happens occasionally. But it's rare. Right? The next thing here, be involved in IEP meetings. Now we all know you have to be involved in IEP up meeting because it's not always a collaborative effort. Sometimes it's a little bit more of a contentious, adversarial. Okay. Yeah, I can think of some of those words. Yeah, we can go over, we could probably spend an hour talking about ones we've had in the past where they had nine people on their side of the table and you better you have 99 years because it's kind of a power play. But also because the ADA, the Individuals with Disabilities Education Act requires transition goals be identified as your child prepares to leave the public school system. And obviously, when you have one child, you have one shot at this, and I can't say our experiences have been but our experience was that there was really no transition planning done at all. Oh, no, even though I started asking when he was 16 years old, and knowing that he had until maximum age 26. And I started asking at 16, what's the what's the transition plan? What does that look like? What are the options? what is out there? As it happened? When Liam was getting closer to his actual transitioning out of the public school system, there were so many budget cuts and things going on that it was really hard to even come up with a plan. Because they're like, well, we used to do this, but that may not be there. Yeah. So it was this horrific fluid blob of I don't even know what's going to be available with a child that really needs to have structure, and a process and a lead time. And it was just like, you guys are not hearing me at all. The impression that I got and I know you did, too, is that you're in the school system, you're on this side of the fence, okay? When you get to be 26, in Michigan, where if you're listening from some other state, it might be 21. But when you're at the end of that school experience, they take you to the fence, and then somebody from the other side of CMH picks you up or community mental health, and now there's a transition, but the world changes, and they didn't prepare you for that. Exactly. And you keep saying, Well, what what is this? What is this gonna do? What does this look like? And I remember hearing this school? Well, they just said, Well, well, it's 26, then CMH takes over, right? They don't even know what the other side does. And side B is like, well, we really don't talk to you until you're over here. It's like, No, that was specific to our county. I know there's other counties in Michigan, where they have very successful transition programs. Yes, you need to go back to the plan early and often. So start asking at 16 start asking it at 18 and say, what does this look like transition plans don't happen at 25 and a half. Although I've heard many people say that that's when they thought it started. It's supposed to start before 18 actually around 16, something like that. A person centered plan is something that's required at after age 18. But you could have one before that just a matter of you know, we'll have a whole section on Person Centered plans another episode, then we have tips to reduce the stress that can accompany behaviors. All right, I do think that Liam has any behaviors that cause stress. Maybe meltdowns in the middle of public places, you know, that can happen. But number one is determine what's most important and stick to it. I liked I kind of like the old saying about what he'll do you want to die on? Right? Is it worth it? Okay, is it just a matter of I will prevail, and, and there's gonna be a lot of collateral damage, because I've got to win it this one? No, you've got to be able to say some things you have to let go of what is the most important, and then like we already said, break it down into different steps, etc. But when it comes to behaviors, there's things that are acceptable and things that are not acceptable, don't attempt to change everything is number two, you know, it's hard for any neurotypical person to change every aspect of their life, work together and respond consistently. One thing that I think our kids are brilliant at is spotting differences between mom and dad, or brother or sister or grandma and grandpa. And exploiting that whether they have ASD or not. All kids are really good at that. But they do need some consistency, getting back to patterns and behaviors might make makes things far more predictable and makes it reduces their stress. And number four is share the burden of the burden, right? This gets down to the relationships between parents and other adult authorities within the family. Sometimes sharing the burden doesn't mean that Okay, we're going to set the table, I'm setting three dishes out and use that three dishes out. It might be that I will cook the dinner and if you could do this part things happen easier. Okay, right. So sharing the burden doesn't mean splitting things down in the middle, nor does it mean that you're keeping score. Because if you do that it's going to be a big problem. You don't win. everybody loses when you're trying to keep score. It should be something which is done willingly. The last one there for stresses that can accompany behaviors is give space when needed? What exactly do you mean by that? One of my, I'm a great fan of Rene Brown. And in one of her books, she talked about her and her husband, how one of them can be feeling great. And without communicating that realize that the other spouse on an energy level of one to 10, or frustration level is maybe a three, I can handle this. Oh, you know what the other ones not. And there could be some, there might not be accurate communication on that. So they had they developed a way to be able to say, on particular days, where are you at? Her husband's name is Steve, which is really cool, because it's a great name. But you'll say, Steve, where are you at today? And he'll say, Well, I'm a seven. And she's, well, I'm about a nine. So now you're, you're saying, Okay, I need to give a little bit more in this relationship, I need to help a little bit more. And as long as you're not being exploited with the situation, but you're being honest, it can really help with stresses that that come up, because it behaviors with kids, because maybe you have a lot more resiliency today than I do, right? And I noticed you Well, I'll be even communicating it, you'll come along and say here, let me do that. Because you can see that I'm about to implode, you know, you've got so many things going on, and you have all these things that you want to do and, and it's not been working out that way. Cuz oh my gosh, we all know that you get up in the morning, and it's like, Hey, I plan on getting these three things done. Actually, I'm gonna get five done because I have that much energy. And maybe you get to irritated cuz all this other stuff kept button in the way. So if you understand that at the beginning of the day, and or maybe even, it may not be at the beginning, maybe it'll be you know, in the middle of the day, or you know, and you're just like, you know what, I'm at a two right now. And this is not working? Well, for me. It's like, okay, gotcha. I can step in here and do some of these things. So don't worry about it. I've got that energy I can do sometimes later in the day might be an eight, because you took some time to regenerate. And again, it's self care. That's really important. Cool. So yeah, give space when needed. Yeah. Except space, when you must be do it back away. Right? Absolutely. It's important. I think the emphasis there is the communication between the adults in the room. Right, basically, excellent. And other what a neat, also another great model for our kids to see. Yeah, you know, cuz like you said, they're very perceptive, they are understanding that you're kind of at your wit's end here. And you know, you're kind of barking a little bit now, like that feeling. But mom's not Bercy so much. So I'm going to go more over this way, you know, so it shows them that sometimes you can take space, you can say, I'm just going to go in my room and relax for a little bit. Because I don't feel good. I don't feel good energy, or whatever you want to write little self care, a little recharge that is kind of like when you're tired, and you really need a power nap, give me 30 minutes, and I'm fine. And you wake up 30 minutes later, and I'm ready to take on the world. Everything changes, right. The last one in terms of tips is tips to reduce employment and financial stress. Now, obviously, there are some things within your control. It's always within your control to ask for flexibility, things like that. But depending upon your job, who you work for, you'll have varying results on this. But that's not an excuse for not asking example. One is request flexibility and explain why let them know why. If it's a small company, and they understand your situation and might work better, but even at a larger company, the chances are you're going to find somebody else in management or in a decision making capacity above your own that has a child with ASD or a nephew or a brother or know someone Yeah, right. So but the you know, finding why it's needed is really important. Focus on what your child needs, not what you can give just because what's leftover, so yeah, there's got to be given take on that. But if your son or daughter always comes in second or third place because of the job, that is communicating a message you don't want to communicate to your child and to your other children or neurotypical children also. So it's a balancing act that certainly is set reasonable expectations and give yourself grace. This is under financial stress and employment stress. Sometimes you have to set reasonable expectations in terms of what you can achieve on the job and what maybe you need to ask for a longer due date at something or additional help find a support group from a male perspective. I thought support groups were people that were weak or Tansy walked into a support group and they got boxes of Kleenex out and that does not appeal to me because I want to focus on solutions. I want to share frustrations but I don't want to nurse things that have gone wrong, although there is a value to that. Okay, I think support groups are more of a positive thing now I look at as being support is not to help me stand up is to help me move forward. And I see that as a more important thing, virtual or in person because right now it's hard to find in a pandemic safe place for groups of parents to get together, right. It's okay to get away in my own note here I put down it's required to get away when someone else gets back to self care brains has provided parents with date nights in the past Now we don't live close to brains, we're about 45 or 50 minutes away. So you've never looked into taking advantage of that. There's other organizations, there's churches that offer some respite. And that might just be like four hours or two hours to go to a movie or something, take advantage of it, and then give back and help the next person. I think that's it's required. respite. Second thing here was respite providers camps and home help. And again, getting back to advocacy, at least in our county. I know, because we've been told, do you want more respite hours, we can have more if you'd like. And we have not reasonably seen where we could take advantage of that. But ask for more respite time, and don't do it with hand in hand, say, you know what, we really need some additional respite hours, right? Ask tell them what you need. The worst thing they can do is say no, but then you could tell them again, but we really need this. advocate now, ask about scholarships and resources, many different organizations that offer therapies and other services that might not be covered by insurance do have scholarships, it can offer some help on a tuition or a fee, right? Or even it goes back to the flexibility. They might have some flexibility in their scheduling that would make it more affordable for you don't want to come every day. I don't think my child could tolerate that. Do you have something where we can maybe come twice a week, and an example of that would be horseback riding therapy, sometimes, Liam is very much into other times and other seasons, he's not so much, but we know there's a benefit to it. And there have been times where we have shared with another family. Okay, there's 12 lessons coming up. Right? How about you do every other one and we do every other one. And it cut the costs in half the therapy organization was more than willing to help us with that, you know, we didn't have a partner family, they would probably find one for us. Right? So ask, you know, yeah, you'd be amazed at what actually ends up happening and comes about. Absolutely. So do you have any other aha moments to share? Steve, you know, Dr. Michael, and Sean covered a lot of area and some very, very important stuff. This is an episode you can listen to several times, and pick up new things each time you do that helped with a great deal of understanding, I'm not going to go through all because we're going to make this an awful long chat cafe. But there's three things that were guess I knew, but surprising the way it manifests. There's three different levels of classifications for ASD number three is requiring very substantial support, then is level two requires substantial support and level one requires support. In the interview, I asked him was there a 2.75 that maybe happens on Mondays? Because it's not always consistent. And you know, Dr. Wolf said, it's where are you seem to have the most problems? You know, me, me, it is 2.5. But we count that as a three or something at that point. So and that's fluid, because it can move. Okay. Yeah. And unfortunately, there's a financial aspect to that too, because some things are covered by insurance, and some things are not so on the level, right, depending on if someone is at level one, and they require some support can't be documented in terms of the school system that this is going to help them educationally, although they need the social support, you're probably not going to get extra resources for that, right. There is a The second thing was a mind body connection. And you everybody's familiar with the term hangry when you're hungry, you can become angry because it affects your moods. Okay, that is part of the mind body connection. Okay, there's things that we can have some control over. And especially if you know that, okay, we're going to eat in an hour, it's harder to explain that to a child with autism who has a need that needs to be met right now. And it causes a lot of stress to them. The basic ones are sensory. And we know that that can be a huge effect with somebody with autism, digestive, yes, there are digestive issues, sometimes because of levels of stress, muscular ability to have control over certain areas sets where PT and OT health and sleep is a huge thing. Because of the rhythms of sleep that people go into sometimes are disruptive, that happens far more frequently with someone who has ASD, okay. And then some things we see is just being well disrupted behavior or not obeying has a physiological reason behind it. And we're not understanding that. And it's a lot sometimes to ask our parents to be understanding in all situations, but if you're aware of that, and you put it on your radar, maybe we can be a bit more attuned to it, maybe we can back off and take our deep breaths, or be more accommodating to the situation and figuring out a way to calm down. Yeah, so we don't have that anxiety level up there. The last thing that kind of broke my heart, and Dr. Michael says this happens quite a bit is somebody who might be in level one, which means that they can talk about how they feel they are they're verbal, they might express things differently than the rest of us do. However, they're complaining about something and then they get treated for bipolar disorder, they get medication and it makes Feel crappy, and that's has been going on for a year is with them and they weren't diagnosed properly with ASD. So then when they are diagnosed these individuals, young adults have a tendency to have a high degree of trust. Because I told you before this was a problem and nobody listened to me. I asked him in the interview, how often does that happen is all the time? Well, it's a little bit easier when you see somebody that manifests autism physically, the way they behave in a typical manner. Typical manner is somebody who is a high functioning Asperger's and is not able to be understood. And they're not really diagnosing it properly. So that that breaks my heart that they've been treated incorrectly, maybe for perfectly good reasons. But they were mis diagnosed. And then that just wow, and then the lack of trust that follows. Well, that's about it for the episode, please check out our website and Facebook pages for the PowerPoint that was created for this presentation. We're going to place that in there. And you can follow along with that, and in many cases, see exactly what they're talking about in terms of resources. We'll also have a list of treatments and resources and a video or two that we referenced in the episode. So please check that out. I think you'll find it very helpful. So you want me to take us out? Sure. Okay, credits, we want to thank our producer and newlyweds son Alex, the youngest spawn of the Johnson client, Alex and his life partner were married in a small private ceremony in our home on New Year's Eve. Ooh, there's no excuse for ever forgetting your anniversary. And the whole world celebrating with you by having a party. We also thanks Holly, our web bizarre and artistic director. Danielle Munoz is our intern who does a little bit of everything in terms of coming up with creative ideas and better ways to do things. And she performs some of the tedious tasks that nobody else wants to do. And we want to thank you, our listeners, because if you weren't listening, we wouldn't be speaking and there would be no podcast. We invite your participation, suggestions and feedback. look us up on Facebook and post your comments, leads. So with that, let's say thank you for listening.