Success for neurodiverse brains
(17 minutes) In this second of two “2018 in Review” episodes, we are going to hear from some of the dedicated clinicians, specialists, educators, advocates, and change-makers working to improve the lives of those of us with Different Brains. Featured are: Ken Dychtwald, Ph.D. (author, psychiatrist, gerontologist, and CEO & Founder Age Wave), Joseph S. Lento (musician and educator), Seth Keller, M.D. (co-chair of the AADMD’s National Task Group on Intellectual Disabilities and Dementia Practices), Jennie Trocchio, Ph.D. (autism educator, consultant, and DIR/Floortime provider), Cuong Do (founder of the Profectum Foundation, co-creator of Identifor, Autism Speaks board member, and the father to a child with autism), John Mavros (educator and author of “Enough iz Enough”), Jim Sporleder (educator and trauma informed consultant), & Jackie Rosen (CEO and Executive Director of the Florida Initiative for Suicide Prevention [FISP]).
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HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman. Welcome to this special two-part episode covering just some of the highlights from of Exploring Different Brains in 2018. In this second part, we are going to hear from some of the dedicated clinicians, specialists, educators, advocates, and change-makers working to improve the lives of those of us with Different Brains.
KD: We need to beef up our scientific creativity and imagination to turn this disease off. If we could do that, if we could somehow create a world without Alzheimer’s, we’ll be having another discussion when we’re a hundred years old, and it’ll be an interesting discussion and we’re going to remember everything we’re talking about today, and we’re going to be talking about great grandkids and the contributions we’ve made to the world. I did a piece for the Harvard Business Review about a decade ago, and I’m not that good a writer but I got lucky and they accepted it, and I won the McKenzie prize that year and they called me up, they said it was the best article of the year, but you’ve tied for first place. I was like, “That’s ok; who did I tie with?” and they said, “96 year-old Peter Drucker, who is the founder of modern management science.” So Mr. Drucker and I had to go to the banquet together. And I’m thinking to myself, “Nan, this guy is 96. He’s done more since he was 65 than rest of us will do in a lifetime.” We can imagine the world without Alzheimer’s; we’re going to see, first of all, intact families, because caregiving can bust up a family and damage relationships. We’re going to see people with more financial well-being, because dementia and diseases of the aging brain could unravel a family’s life savings. We’re going to see the ability to have the dream of history: 5, 6, 7 generations alive at the same time, all interacting, all contributing, all making sense of what the future could be.
JL: You know many years ago I actually put into a study what was going on with the kids in my program. You know, it wasn’t anything new that people had done before but in terms of the populations of kids I was using that was different. I was teaching at Lemon High School, and I used, probably close to 200 students in a study and they were not only kids with the highest traditional IQs but also kids with emotional in academic problems and I did a side by side comparison of the students who took instruments with music and those who did not. And the kids who took instruments with music including the ones that before had lower grades of the sudden we’re now scoring much higher in every academic subject that was taught in the high school whether it was foreign language, science, math, history. All of them with a minimum of two years of experience in my class now began having much higher grades and I’m very very proud of that because it really shows the power of music across all different brain types. So, that’s something I still use till this day when I’m discussing things with people. And also making music more accessible to our students with special needs. I’ve recently been involved with the company called Looe Music for which I’m not a paid endorser or anything like that. And they devised a polymer trumpet which you don’t hear to my right which is so light weight that people who have motor difficulties and who lack certain upper body strength, they can negotiate this instrument as I’m very, very happy to began the process of opening up awareness of the instrument. This a prototype and it’s not complete yet. Now I’ve played it and it’s got a wonderful sound and soon when the finished product is available I’m going to play it and I’m going to share it on the Linked in website but, the cost value of something like this, but also be something that, special needs communities can afford. And bringing music to special needs communities is something really, really, wanna do. So anyway I can do it, I’m going to do my very best to do that.
HR: What are some of the simple tools that I can use that make sense for me to be doing.
SK: Well, it’s actually a marvelous question cause it really has a lot to do with health promotion. Promoting our health and allowing ourselves to age health-, in a healthy way, uhh, and it’s really everything that we do, starting at a young age to as we’re getting older to do just that, to be healthy when you’re older, and there’s no doubt that there’s a great growing science, Hackie, on, on the uhh, the brain health and things that absolutely can be done throughout our lifespan to really make ourselves uhh, uhh, well when we’re older, in, in our mind. And, and one thing really, basically is just keeping very socially active. There, there’s a lot of research that talks about people with interactions and conversations and reading and thinking through and keeping very busy is very good. And that is really working your mind. There’s a lot of research, a lot of studies, a lot of information that talks about that, which kind of parlays into what people talk about with word games, with sudoku, and other kinds of things. So that’s kind of really where a lot of that comes from about that, working things through. And one example is that what we do naturally in our lives to kind of keep ourselves going is right now, I’ll use an example, you just literally picked up a glass with your right hand, automatically and picked it up. So what that means is that you and probably you didn’t give it much thought, and here I got my glass too, so you’re basically have a pathway in your mind of what naturally you use, right handed or not, pick it up. So that’s a pathway that you have formed in your brain. So a way in which we talk to people, that I do, people trying to help their pathways in their brain stay healthy, is do things differently.
So, for instance, if you naturally always use your right hand to pick up your glass, try doing the opposite side. Do it and do that more regularly. That would be the same thing, say, brushing your teeth. If you naturally brush your teeth with one hand, work in the other side. You’re driving your car and you know naturally that you go one direction every time, next time maybe try a different way. So what that does is actually works our brain to learn and use other pathways and it exercises the brain in that fashion. That’s number one. Number two is what we, the way we treat our bodies has a big difference. So do we smoke cigarettes, do we get our blood pressure checked, do we eat well, do we not, our sugar, diabetes controlled, everything like that is huge in terms of brain health. People who have uncontrolled blood pressure problems absolutely have a much higher rate of cognitive brain dysfunction. People that smoke a lot, who have a risk of brain dysfunction because of that, absolutely. People end up having strokes, worsening memory problems, there’s no doubt that what we put in our bodies have-have-has impact. The way we exercise, so if you get your heart rate up on a semi-regular basis throughout your lifespan, and not waiting until you’re 56 years old. It’s not too late, of course, to do that, but try to do things throughout the lifespan which is really important for people to realize. “Why am I doing it now? Why am I putting this effort in now? Even though it makes me feel good?” You’re basically protecting yourself for later, and I guess that might be esoteric, you know, later in life I’m doing all this work now, 40 years before I get older, 30 years, 20 years, it really makes a difference. You know, for those who’re already that age and say, “Boy, I wish I did this,” but you know, you live, you learn from that. The key thing, Hackie, is how do you take someone and change their bad habits, or I hate to say lazy habits, and make them someone that does these things? How do you get someone to go on a, what we would call a health promotion program? That’s not an easy thing to do, especially in those with developmental disabilities, who sometimes need supports, and they need mentors, they need people to look at around them who sometimes may need to support them, be a good observer, uhh, and good role model. That’s something that’s very important, especially in those that have developmental disabilities, that, that, you know, go with families or direct supports.
HR: Now, my daughter Rebecca is always reminding me, “Dad, sometimes good intentions are not enough,” and parents have great intentions, but what is, like, some of the biggest, what is the biggest mistake that parents make when they’re interacting with their children on the spectrum? Or their adults, for that matter?
JT: The biggest mistake? Umm, I think, possibly, the biggest mistake I see is that parents are interacting at a different, a different level, often a little bit too high, umm, and not taking the time to just watch their kids, and think about what are they doing and why. Sometimes I like to say, “Ok, let’s just take a minute, back up. And instead of just coming in with our agenda,” and I guess that’s really what I see parents doing. They come in with their agenda. And, you know, today we’re gonna do this, this, and this. Umm, but instead, let’s take a minute, watch what the child’s doing, and think about where’s their attention, and what is their intention. What are they trying to do? And then we can kind of figure out why, and then we can join them in that. Umm, but coming in and just kind of directing a lesson is what it feels like sometimes, instead of just playing, taking time to, to find joy and to have fun and to smile. And that’s, uhh, I think that if every parent would take two hours out of a day, I know that sounds like a lot, but when you see the data about how often we’re on our phones and devices, it’s kind of small potatoes, but like two hours, that’s, 15 minute increments, totally manageable, excuse me as I’m processing this, umm, but two hours to play, to have fun, to interact in a way-
HR: To connect.
JT: …that’s enjoyable, to connect, I think if every family could do that, you would know one another a lot better, relationships would be stronger, and would really be able to, to get some momentum going.”
CD: So the theme of everything I’ve done over the last 15 years as it relates to autism and as it relates to the special needs community is a grounding in the belief that you have to start with the individual, and if you can connect with that individual, you then start to understand what he or she is good at, so that and once you understand that, you now are set on a path to explore things that hopefully will open up a future. Right? But then I think the other aspect is once you have identified what these things are, once these individuals are now adults, you have to support them with their needs as well. Just because you graduated from high school doesn’t mean that the need for support disappears. I would argue the need for support actually increases because Mom Dad aids are no longer around as they were before, and so how do you continue late support this person as an individual rather than as some kind of a group therapy or group support?
HR: Oh, OK. Now, what is one piece of advice that you’d give to parents struggling whose child is struggling with some behavior in school and other things in school, and they don’t know how to help him or her? What is your advice?
JM: OK, start with the child. Show interest and support. Ask the child questions. Try to understand what the child is feeling, what the child is going through. Go to the teacher. Go to the teacher after you talk with the child. Don’t jump to conclusion that it’s anybody’s fault, anybody is to blame. Communicate with the teacher. This is something that I advocate. School districts, schools, and school principals to get to happen the first month of school. The teacher reaches out to talk with the parent to have just some casual conversation, like, “How you doing? My name is Mr. Mavros, I’m concerned about doing the best I can to help your child learn and would you just tell me a little bit about what I might be able to do, how I might best work, how this might work, if there’s any ways that you would suggest for me to be helpful.” This can happen in the first week of school and without even talking about what the, what the grading system is, what the child has to get to learn. This is normal protocol in any situation where you have a group of people and in this case, a student, a parent, and a teacher, that’s going to be working together. We’re going to be together whether they’re working or not they’re going to be hopefully joining together for the entire year. I suggest that there be a family orientation month. Not just a family night, not just a family open house, not just a formal PTA, but a whole month in which teachers are encouraged to reach out and then they carry that out for the the rest, every, every month to try to make a contact with every parent once a month. After the big holiday that we generally celebrate at the end of December, going into January, this order should start over again. Not with the whole month of services, but just to be sure that they reconnect.
JS: Absolutely. You know, you brought up a good point in that–I guess one of the biggest learning things since we’ve talked is that I’m beginning to understand that it’s a transformation within who you are as a person. We don’t do trauma-informed and that’s one of the misnomers out there is that some schools will get a training and they kind of check box and say “we’re trauma informed, or we already had that training.” And always share trauma isn’t something we do. It is, it’s who we are. It’s who we become. And it becomes our identity, it becomes our culture, it’s how we take care of our kids, it’s how we take care of each other, our community, our parents. And I’ve known this, and I’m gonna give credit my Lincoln kids in transforming me. Now it’s how I treat the cab driver that gets me to the hotel. I wanna make sure that I have a positive interaction with that person or the car rental bus that takes me to the rental lot. I want that person to know that I recognize them and that I appreciate them. And so it’s always looking for positive intent. Because you never know that’s sunshine in their day that may make the difference. We didn’t have to know. But when it comes to who you are, you’re intentionally looking for those opportunities.”
HR: What is one piece of knowledge and advice you like to give to our DifferentBrains.Org audience?
JR: There’s three words that I use… three groups of words: be aware, care, and share. Share the knowledge you learn. Be aware so that you know when somebody is in trouble. And care enough to do something[/expand]