311 – Jordan Jankus of Wallingford, VT A Disability Advocate, Founder of Plastic Learning & Father Of Child With CP

Transcript:

Tom Couch: [00:00:00] Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.

Jordan Jankus: If you have an IEP meeting where they’re getting services, bring them to the meeting. Bring the child to the meeting. Don’t just let them be a name on a piece of paper. Because if you say to somebody, I don’t think this kid can work, say that to the kid. Don’t say it to just the parent. It’s much more difficult to say no to that person in person.

Tom Couch: That’s our guest this week, special father Jordan Jankus. Jordan is a disability advocate, a freelance writer and founder of Plastic Learning, exploring opportunities for people with cognitive challenges. He’s the father of two, including Jesse, 45, who has multiple disabilities, [00:01:00] including cerebral palsy. We’ll hear Jordan’s family story, how he founded Plastic Learning, and helped develop the iPad as a learning tool for people with disabilities.

Tom Couch: It’s a fascinating conversation that we’ll hear on this week’s Special Fathers Network Dad to Dad Podcast. Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Special Fathers Network Dad to Dad Podcast, presented by the Special Fathers Network, a dad to dad mentoring program for fathers raising children with special needs.

David Hirsch: The Special Fathers Network MasterMind Group experience is the most comprehensive program the 21st Century Dads Foundation offers. Dads raising children with special needs meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books, and sharing heartfelt challenges. One of the highlights of the year is attending an in-person weekend retreat. We’re launching 10 new MasterMind groups in 2024 with 10 dads per group. That means we’re only [00:02:00] looking for 10 like-minded dads in each community. If you’re a dad raising a child with special needs, we hope you’ll join a local MasterMind group and make the investment to become the best version of yourself. For more information, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: So let’s hear now this conversation between Jordan Jankus and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Jordan Jankus of Wallingford, Vermont, who is a disability advocate, founder of Plastic Learning, a freelance writer, and perhaps most importantly, father of two. Jordan, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jordan Jankus: My pleasure.

David Hirsch: You and your wife, Kathy, have been married for 49 years and are the proud parents of two children: Justin, 35; and Jesse, 45, who has multiple development disabilities, including cerebral palsy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jordan Jankus: I grew up in Queens Village, New Yok. A pretty privileged middle class background, I’m happy to say. And my dad [00:03:00] was in the meat trade. He owned a business that made exciting things like hot dogs and bologna. [David chuckles] And my mom was a stay at home housekeeper. And I had an older brother, Jonathan, that we had a good time together growing up.

David Hirsch: That’s very interesting that your dad would be in the “meat trade”…

Jordan Jankus: Yeah.

David Hirsch: …and making exciting things like hot dogs and bologna. Did you actually witness how they’re made?

Jordan Jankus: Oh, I did. In fact one of my days during the Woodstock years in the sixties, when I was more involved in campus demonstrations and whatnot, he convinced me one summer to work in the hot dog part of the factory. And if anything will convince you to go back to college, that will. [David laughs] Making hot dogs. It took me quite a few years to be able to eat hot dogs again.

David Hirsch: Yeah, well, people have said the same thing about watching how a hot dog is made, you’ll never eat another hot dog again.

Jordan Jankus: Yeah.

David Hirsch: But they taste so good when you go to a baseball game, right?

Jordan Jankus: They do.

David Hirsch: Okay, thanks for sharing. How would you describe your relationship with your dad?

Jordan Jankus: He was a very caring person, very gentle. He [00:04:00] had a difficult life growing up. Childhood problems of abuse, and it wasn’t a happy childhood that he had. And so I think he overindulged on the other end of never being very strict with us, always very kind.

Jordan Jankus: I always remember as a little child that he got me a Christmas present and he could see on my face it wasn’t the one that I wanted. And we had an incredible snowstorm in Queens and he went out and he schlepped [David chuckles] about a mile to the store and exchanged it for the present that I wanted. And that was just the kind of guy he was.

Jordan Jankus: Unfortunately, because the nature of his business where you’re always, his hours were incredible, and he would start the day at four o’clock in the morning and come home exhausted at four in the afternoon. We didn’t see a lot of him until weekends. But when the weekends came, he made sure that he would take me to movies and we would do something. And so he was a very generous man, very generous.

David Hirsch: Yeah. It [00:05:00] sounds like he was a caring soul. Sometimes when the pendulum swings one way, like you were describing his growing up, pendulum tend to swing the other way. You learn vicariously through experiences and you don’t want to repeat some of the same things that you witnessed or experienced yourself.

David Hirsch: When you think about your dad, is there an important takeaway or two, lesson learned, that comes to mind?

Jordan Jankus: Always be kind to people. My mother would always criticize him because his factory in Ridgewood, the guys would come up from some agency for the blind and he would always come home with a handful of potholders that he had bought from them. And she’d always say, why are you wasting our money? And he would always stop to help people.

Jordan Jankus: And in our particular family, eventually he wound up living with us. And he gave my son the incredible experience of a loving grandfather through his early years. In fact, when Justin was little, his grammar school was maybe around four blocks away, and if Justin had a cold – my father was a big man, he was like six foot four and [00:06:00] hulking kind of guy. And he would walk over to the school to get his assignment to make sure that Justin didn’t miss out on his schoolwork. [David laughs] And when you see this huge man walking into this school of tiny people and stuff, it was just an incredible image.

David Hirsch: Yeah, thank you. That’s a very stark visual image that you’ve created. I’m thinking about other father influencers and I’m wondering what, if any, relationship you had with your grandfathers, first on your dad’s side and then on your mom’s side.

Jordan Jankus: I didn’t have any with my dad because his father had passed when he was a teenager. And my mother’s father I had dim memories of him that he was generous but unfortunately he also has struggled with alcoholism and he finally wound up dying in a car crash when I was 10 years old and he had a very troublesome relationship with my mom.

Jordan Jankus: I wouldn’t say a lot of influence, except I remember sometimes he would come home. When I was staying at my grandparents, he would come home a little bit buzzed and [00:07:00] next thing you know, I’d be learning how to do a polka with him. [David laughs] That’s pretty much my only influence.

David Hirsch: I’m thinking of other father figures. Any other men that played an influential role, positive adult male role models while you were young or perhaps as a young adult?

Jordan Jankus: Not so much as a young adult, but when I became an adult. We have good friends of ours. This is just a remarkable man. He started out in the priesthood and then he left to have a family. When we became friends with him, I was still in the corporate world. And I was always amazed that when you came to his house, he was baking bread, taking care of his five children. And I would ask him, “How do you find the time for this?” And he says, “My major focus is being a father. That’s the most important thing to me. I work my life around that.” And that was just a great lesson from a friend.

David Hirsch: Yeah. You’d like to think that everybody would have somebody like that in their lives that says this is the most important thing in my life. Prioritizing that. Yeah.

Jordan Jankus: Wonderful thing about him, we lost touch over the years when we moved [00:08:00] out of state from New York and then my son got a letter addressed to him. And it was from this friend who still lived on Long Island. And he was just saying, let’s get back together, and this only happened two years ago. And I guess we had been apart 20 years. So now we see each other a couple of times a year, and it was just nice to reconnect and just say, so how did it go?

David Hirsch: Very interesting. So what’s his name?

Jordan Jankus: Henry.

David Hirsch: You’re very fortunate to have somebody like Henry in your life.

Jordan Jankus: Yes, I am. Absolutely.

David Hirsch: So my recollection was that you took a BS in finance from New York University.

Jordan Jankus: Yes.

David Hirsch: And I’m wondering where did your career take you after that?

Jordan Jankus: As I mentioned before, my college years initially were in the Woodstock generation. So I had many credits in English and also video, not too much in anything that would result in a degree. So when I got married, I went to night school to finish my degree and I got the finance degree. My first jobs were in what they call consumer finance, which was [00:09:00] basically small loans to individuals. And I became the last thing I would ever expect: I became a collector, knocking on doors and trying to get that $5 from somebody. And that got pretty old, pretty fast. And then through a friend of the family, they introduced me to corporate, the corporate world of lending. And I started out on the ground floor of a company that did asset-based loans. And I stayed in that quite a while, probably around 15 years. And that grew into the go-go days of leveraged buyouts in the ’80s and mergers and acquisitions. Going around the country.

Jordan Jankus: I wouldn’t say that any of this work, though it was fascinating, you would come and have somebody say to you that I need to buy this company and has to be completed in two months. And I would have to learn everything about the bowling industry. And then, I’m full of great cocktail chatter because I know about the casket industry, stuff that has no practical merit. [00:10:00] And you would stay up all night in a lawyer’s office and then press a button and twenty million dollars would go to somebody. And then the day would start again. But it was never personally satisfying. It wasn’t soul satisfying at all.

David Hirsch: I can relate to what you were saying as it relates to the type of work that takes place in the world of finance. And I really love my job and the work that we do and the clients that we’ve developed over 30+ years. I have said that I don’t think this is what I was called to do is to help wealthy people become wealthier. [he chuckles] I’m very fortunate to have found a calling and not had to pivot or go do something different, that I can straddle the corporate world and the not for profit world, if you will. I could relate to the comment you were making about maybe not being soul satisfying.

David Hirsch: My recollection was that you got a certificate in assistive technology from New York Medical College, and then you went on to get a master’s degree, MPH, in behavioral science and health promotion from [00:11:00] New York Medical College as well. Was that part of training, educating yourself for this sort of second career?

Jordan Jankus: Besides finding a wonderful wife who I fell in love with, she happened to also during my transition to human services, she went back to the work world and she worked herself up to an administrative position at a medical college that was local, New York Medical College. And they had a wonderful benefit at the time that spouses could get a free education.

David Hirsch: Oh my. [laughing]

Jordan Jankus: Yeah, it was wonderful. So I first got my degree in assistive technology, the certificate. And then she convinced me that maybe you should go get a masters, too. And so at 64, I got my masters degree. I was the oldest person in the class, but it was absolutely fabulous just to be able to think and just focus on something and learn things I had never learned before. It was a gift and the price was absolutely perfect.

Jordan Jankus: [00:12:00] From there, my thesis was on using iPads to help people with cognitive disabilities. And a couple of years after I finished my degree, that’s what I was doing at an institution, at Arc of Westchester. So I wrote a dissertation that resulted in a job, which was pretty cool.

David Hirsch: Yeah. Very interesting. Thank you for sharing. Out of curiosity, how did you and Kathy meet?

Jordan Jankus: We met when I was in consumer lending. One of my colleagues at the office was laid up, I forget what kind of illness, and we needed a substitute representative, and they sent over this beautiful Irish girl from another office. It wasn’t love at first sight; I think it was love at first sight the Friday of that week when she was at our office. I needed a lift home and she took me home in her Chevy and we stopped for drinks and got to know each other and next thing you know, six months later, we were married.

David Hirsch: That’s a great story. Thank you for sharing.

David Hirsch: Let’s talk about special needs first on a personal level and then beyond. And prior to becoming parents, did you or Kathy have any [00:13:00] experience in the disability community?

Jordan Jankus: No, she did not. And the only one that I had was a cousin that I very distantly knew. He would come to holiday events and my mother told me to play with him, interest him. And it was obvious that he had cognitive delays. I didn’t know what cognitive delays were at that time and stuff, but I was told to go play with him in the room. And that was my first brush with it. I hadn’t really thought of it other than that.

David Hirsch: Okay. So what is Jesse’s diagnosis and how has it come about?

Jordan Jankus: I guess you could say multiple disabilities. And it was a total surprise to us because my wife had a totally normal pregnancy. And then we were watching Johnny Carson in the bed and her water broke and we ran to the hospital. And unfortunately the resident on duty obviously was on duty for 23 hours. He was punch drunk from lack of sleep. And despite the fact that there was evidence of fetal [00:14:00] distress, he said, let’s wait a while. And between that waiting for about six hours, between when the obstetrician finally showed up at the hospital, Jessie became who she was.

Jordan Jankus: I remember sitting, waiting for his arrival and listening to the heartbeats of Kathy and the baby. And every time that Kathy would take a contraction, Jesse’s heartbeat went further and further down. And then finally early on a Saturday morning they decided to do a C-section. And the crazy thing about it was that we knew that she had a difficult birth and she stayed in the hospital for a couple of months after that. But nobody really on the medical side prepared us for the extent of her disabilities.

Jordan Jankus: And this is a story I’ve heard repeated so many times from other parents, that it was only when… Kathy has this giant Irish family, absolutely giant Irish family. My brother-in-law and sister-in-law, they delivered in December, a month prior to Jesse, so we had [00:15:00] a benchmark. And then we would see him and little Paul progressing and Jesse not. She would crawl and she would crawl just with one leg. She was different. And then it was a lot of people. In fact, I mentioned Henry, my friend before, his wife, who was a pediatric nurse at another hospital, said, you should go talk to the hospital again.

Jordan Jankus: And the pediatrician that we had was totally useless. He just said, little mother, she had a difficult birth. Don’t worry about it. She’ll catch up. And it was only when we went back to the original hospital. There was a neurologist there, a pediatric neurologist that had done a whole study on Jesse. We had never gotten the report, but it talked about that she would have continual multiple disabilities, cerebral palsy, probably wouldn’t walk until she was eight or nine, and difficulties in learning and speech, the whole complement of developmental areas. And she was shocked that nobody had shared this report with us.

Jordan Jankus: Kathy, [00:16:00] she’s a doer. Me, sometimes I’m the more emotional one. I cried in the car and she said this is what I’m going to do. And she started taking her to every kind of service. She enrolled Jesse in Early Childhood Intervention, which thank God, Jessie was born just around the time that Early Childhood Intervention came into common practice. So she was enrolled in a program by the time she was two years old. If this had happened earlier, maybe back in the late ’60s, early ’70s, she wouldn’t have gotten the extensive services that she did. So we were blessed on that.

David Hirsch: Yeah. Thanks for sharing. And going back to the birth, this elongated, difficult birth. Whenever I hear stories like that, certainly more current stories, there is usually some medical malpractice claims made. And I’m wondering if that had occurred to you or if there was actually a claim that you made against the hospital as well.

Jordan Jankus: We did eventually. [00:17:00] Initially, we just uh, kind of, well, that’s the way of the world. And then my wife got a job working for an audiologist. And his wife, who also had a special needs child, said people shouldn’t be born this way. Something went wrong. So we started the process. We engaged a law firm on Long Island that had the unique combination of a lawyer who was also a pediatric neurologist. And they started the case and looked at the hospital and all that and it turned out there was malfeasance.

Jordan Jankus: And it was a long process, a long process of actually getting the settlement. It took almost five years. But because of the settlement, Jessie had a very nice life as far as the extent of services. We were able to have live-in help for quite a few years when she was growing up. Anything that she wanted she could have, and we were blessed with it. We didn’t expect it at the beginning. It was only the persuasion. Again, these [00:18:00] friend networks that come and say, hey, wake up. This is what you should be doing. Without that, we would have just gone through a lot more struggles than we did.

David Hirsch: Yeah. Thank God that there was some financial relief. It’s hard to imagine what life might’ve been without that.

David Hirsch: You do emphasize a really important point that we benefit from being in community with others, right? And it’s hard to imagine exactly what the benefit will be, but when you’re open and transparent about your situation and you’re connected to others, you’re going to be closer to finding the best resources for your child or for your family. And that certainly is what I heard you say.

Jordan Jankus: Yeah. If I could just mention one thing on that, it’s we’ve learned so much from other parents. And sometimes it’s frustrating being in parent groups because developmental disabilities are so varied, so different from child to child. We would go to meetings where I would [00:19:00] complain about Jesse’s walking ability and somebody else was talking about the difficulty of feeding tubes with their child. So you’re trying to find commonality and it’s very hard. But the idea is that parents are talking. This became the informal network, the foundation of where do I find a doctor, a dentist that’s going to do work on my child even though she’ll scream through the whole procedure. And that network is the one that everybody tapped into in Long Island and in Westchester when Jessie was growing up. We didn’t have a lot in common except that boy, the traditional system didn’t have answers. And so we provided each other those answers.

David Hirsch: Yeah. Thanks for sharing. Very important. And not to focus on the negative, but what have been some of the bigger challenges that you’ve encountered as parents, either early on or as Jesse has gotten to be older as well?

Jordan Jankus: I’d say the hardest thing that advocacy never stops. I happen to [00:20:00] be 73 years old as we speak right now, and I just spent the last two months trying to get the appropriate walker for her that’s the most stable while still giving her the ability to really maneuver around. Unfortunately, the traditional Medicare and Medicaid system will give you a $200 walker. That’s fine, but it’ll tip over. And so I had to advocate for this $700 walker that I know works for her.

Jordan Jankus: And it’s just that advocacy never ends. You have the challenges of just making sure your systems communicate with each other. She’s in a group home now. I have to make sure that the people that are the clinical team leaders at the headquarters are talking to the house. I’m picking her up next week for a visit. I have to make sure that her meds come to the day program where I’m going to pick her up. And so it’s all this involvement that continues because unfortunately Jesse has limited speech [00:21:00] capacity and cognitive ability to speak up for herself. A family has to step up and really make sure that she’s provided with as much as possible in the way of system supports. And after we’re gone, part of that is making sure that you find a service agency that will take over that role after we’re gone. But for those that have the most severe needs, somebody has to be that voice and that has been a constant challenge.

Jordan Jankus: If I go back to the days of when we moved from Long Island to Westchester County, which was a big change. If you go into McDonald’s and you order a quarter pounder, no matter where you are, it’s the same thing. If you go to different school districts, that doesn’t hold this, even though it’s within the same state. Our quarter pounder might have mayonnaise on it versus ketchup.

Jordan Jankus: We came from a great school system in [00:22:00] Long Island and then logistics just said we should move to Westchester. We moved there and Jessie had a lot of services. And here’s somebody that has difficulty walking. The more physical therapy she gets, the better. We go into a committee on special education meeting and the first thing that we’re told is, “Mr. and Mrs. Jankus, thanks for coming to our school district. Unfortunately, we can’t provide physical therapy because we don’t see how it’s educationally relevant.” My head blew. My wife held me back [both chuckling] so I didn’t jump at the chairman of the committee.

Jordan Jankus: And what it was, you found out that the system, number one, it’s cost that drives it. It’s money. And that you have to understand, not on an adversarial way, but you have to understand how the system works. It works on funding. And there are just so many people that will say okay and there are those other ones that say no and you have to try and balance that. And so I wrote a letter saying, “Can you please explain to me [00:23:00] how basketball is educationally relevant for the able-bodied population?” And next thing you know, Jesse got physical therapy because there was no grounds anywhere in any rule book that said she shouldn’t get PT. They were just trying to save some money.

Jordan Jankus: And so rather than castigate them and say that they’re terrible human beings, I learned the best thing is to be on the CSE committee as a parent volunteer, so that I could help other parents, but also they would look at me and know Jessica and make that connection and that we would always have Jesse front and center in their mind.

Jordan Jankus: And that’s what you have to do, that basic advocacy. And I’ve always encouraged other families, if you have an IEP meeting where they’re getting services, bring them to the meeting. Bring the child to the meeting. Don’t just let them be a name on a piece of paper. Because if you say to somebody I don’t think this kid can [00:24:00] work, say that to the kid. Don’t say it to just the parent. It’s much more difficult to say no to that person in person. This is a human being with potential. We don’t know how much potential, but don’t relegate them to your terms, your budgets, and your caprices of judgment. Make sure that they’re physically there. And then they say, “But my kid doesn’t talk.” They talk by just being there. Again, it’s advocacy.

David Hirsch: Yeah thank you for the emphasis. I think what I heard you say is that advocacy is just like being a parent. You’re a parent 24/7, right? You’re always going to be a parent. And in this case, you need to be a little bit more intentional about speaking up for, speaking out, for your child, particularly if your child isn’t verbal or doesn’t have the cognitive ability to speak for themselves. And I think the most important thing I heard you say is the presence of your child at an [00:25:00] IEP meeting, which I don’t think is common practice. And I think it’s brilliant because I think it holds the whole group more accountable to what’s in the best welfare of your child. And not just talking about them institutionally, if you will. So anyway, brilliant. Thank you for sharing.

Jordan Jankus: Can I add one thing, too?

David Hirsch: Sure.

Jordan Jankus: When Jessie left school to join the adult world, and she joined what they had at that time was a sheltered workshop. In our particular area of Westchester County, we didn’t have mail delivery. We had to go to this little post office box at our tiny town. During Jesse’s first review meeting at this sheltered workshop program, the social worker, we’re all gathered around the table. Jesse’s there, everybody’s there to talk about Jesse, and she begins reading from her life plan. And she says, “Jessica Jankus lives at Post Office Box 374 in Crompon, New York. [David laughing] I said, “Stop. She’s left there. She found it too confining and [00:26:00] too dark.” And I was trying to just make the point she doesn’t live in a post office box. She lives with her parents and she has a full and active life. See her as a human being. Just don’t read about her on the paper.

David Hirsch: Yeah, I love it. Thank you. So I’m curious to know what impact these challenges have had on Justin, Jesse’s younger brother, your marriage, or your extended family for that matter?

Jordan Jankus: I think everybody has a contingency plan in the back of their head every day for what’s going to happen. And Justin, it took its toll on him as a little boy because Jesse had so many toys and everything because of her funds. And he would try and go into her room. And there’s quite a few years that separates them you know, they’re nine years difference in age. And so when he was a little guy and he wanted to go into her room she would just throw him out. I’d say, you can’t hit her, you can’t get angry because she doesn’t know that, she doesn’t understand it.

Jordan Jankus: And [00:27:00] then when he was in his middle school years, he was so frustrated because his friend’s sisters could drive their brothers to the mall and my sister, who’s older than me, can’t drive me anywhere. And then you’d have to sit down and say, hey. Anyway, he has become probably one of the most compassionate caring people I’ve ever seen in my life. At one point I had hoped that he would go into human services, but I think he had enough of it. He did a couple of summer camps for special needs children and all the teachers said, he’s fantastic, he’s great. But I think he had enough of it.

Jordan Jankus: But we would go out to dinner and have a lovely time. But both of us, Justin and I, knew that if we heard a burp, that meant projectile vomiting episode was coming. And we would have, it was almost like bringing the Blackhawk helicopter and we’re out of here. And we were well-practiced on how to deal with Jessie because she was unpredictable.

Jordan Jankus: It definitely had [00:28:00] the effect of… Like I mentioned, Kathy’s from a large Irish family, so it split us in some ways from the rest of the family. If everybody was going to do some physical activity like skiing or something like that, all of a sudden they could go, but really we couldn’t see a practical way to do it with Jesse. So it limited. And I’ve known other parents that have had that where the family split – I’ll take care of her, you take care of the rest of the family on weekends or whatever. So that’s a limiting factor.

Jordan Jankus: I think our blessing has been again, in Kathy’s family, both my parents are deceased at this point and my brother and I are not close. So Kathy has this Irish mafia of brothers and sisters that generously would come and live at our house and let us go on a ocean trip, ocean cruise for a week and take care of Jesse. And Jesse to this day always wants, if she hears Uncle [00:29:00] Jimmy or Aunt Ronnie, she says, “Uncle Jimmy oatmeal, Aunt Ronnie pizza.” And she loves seeing them and they are active in our lives and our other relatives are.

Jordan Jankus: We just came back from a trip to Florida where we visited her uncle and she celebrated her birthday two or three times while we were on that trip. And I don’t know what we would have done without that family and that system of supports, because it gave us a chance to get together as a couple, as just two people versus always in the trenches. It was a relief.

David Hirsch: Yeah. I think all parents benefit from getting that relief that you’re referring to, whether you have typical or atypical kids. And while your family isn’t very large you certainly have been the beneficiaries of Kathy’s large “Irish mafia family.”

Jordan Jankus: Yeah.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st [00:30:00] Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey, will receive a Great Dad Coin. Thank you. Now, back to the conversation.

David Hirsch: So I’d like to talk about Plastic Learning. Where did the idea for this come about? What’s the backstory?

Jordan Jankus: The backstory is when I was transitioning from the corporate world to human services. I always wanted to be in the field of human services, but the closest I ever got was being interested in reading about it. But if I went to Barnes & Noble, and you can still do this to this day, you go in there and look at the bookshelves under special needs. And when I started this out, there weren’t that many books on special needs. But then as time went on, and especially in the world of autism, [00:31:00] more and more books came out. But there’s a huge lack of books about what happens after the child leaves the secondary education. It’s almost like they drop off the face of the earth. And there’s this sad but I think prevalent feeling that this is as good as it gets. For some reason, I don’t know what, it’s faith or just innate curiosity, I said, this can’t be. This can’t be.

Jordan Jankus: Plastic Learning, it was something that I started reading about brain plasticity. That in the last 20 years, there’s been so much growth in just the studies that the brain is not just something that is fixed in physical state and mental state. It grows. It constantly changes. The areas of the brain substitute for other areas that are damaged. And I’m no physician. But I’m just saying, this is something that maybe can be applied to this world of especially [00:32:00] cerebral palsy, which is largely caused by brain damage. Maybe there’s some salvation in this.

Jordan Jankus: And when Jessie finished high school and she was in a workshop, and then finally they closed sheltered workshops and they turned it into day programs. Granted, these are people that are not making a lot of money. And they have a room of 20 people with various types of disabilities, all kinds of needs. And like Jesse, one day you’ll have somebody that you’d best laid plans for what you’re going to do in programming that day, and somebody gets sick. But there’s more that we can do for adults with disabilities than just put on a Disney movie and wait for the bus to arrive in the afternoon.

Jordan Jankus: So I’m starting from a very basic area and just saying, can we do more than we are doing presently? And this is a kind of radical idea in this system because there’s a lot of focus on, and rightly so, that there’s people that [00:33:00] should have jobs, that are capable of jobs. You had featured that one gentleman with Down syndrome that opened his restaurant, the guy with the hugs. But there’s a lot of people that don’t get to that level. And what do we do with these people? And it has a lot of commonality when you look at nursing homes and people gathered around the nurse’s station, clustered in a pack waiting for some kind of human contact. If we don’t stimulate people what can we expect from them? If you put somebody in front of the boob tube they’re going to not grow whatsoever.

Jordan Jankus: And I’m not talking about anything real radical, but I watch Jessie with all her challenges of walking and talking and all that. At the end of the day, I should say in the morning, when she’s staying with us or when she visits Uncle Paul in Florida, she is so proud to open the dishwasher and take out the silverware and put the silverware away. We have a Keurig coffee machine that [00:34:00] she loves to make her own coffee. And thank God for Keurig that they invented a machine that you can make your own coffee. And she’ll watch it drip down and I give her a high five. She is absolutely thrilled.

Jordan Jankus: And one morning, when she visits us here, we always have to be attentive to what she’s doing and make sure she’s safe. But one morning I overslept and I went into the living room, kitchen area, and she had gotten up before us. And my wife has a routine of opening the shades throughout the house. We have a lot of windows that let in lovely Vermont sunlight. She had gone around this whole room. And you’re talking about a room that’s 40, 50 feet long. Opened up all the shades in her walker, and when she couldn’t get it to her in her walker, she would just cruise from chair to chair. And I looked, and I said, this is amazing. And she just did this last year. And so she, at 44, she learned to do an extraordinarily complicated task.

Jordan Jankus: [00:35:00] And in the care system, people would have said, she can’t do this because it’s too dangerous. Maybe if somebody was watching, she could do this. Oh, she can’t make her own coffee because it’s too dangerous near the stove. Get a Keurig coffee machine! Give people opportunities and really just try and say, can you do more than you are doing? And long term effect, I think it can help. I’m not a scientist. I’m not a neurologist, but boy, there’s so much more that we can do.

Jordan Jankus: I’m saying through Plastic Learning, I’m trying to find simple apps that will be able to help people live a richer life. Think about things that we can do with them that’s more interesting. One of the exercises is, thank God because of the web, go online, and look at some of the pictures in a museum, and just have a conversation with the guys in class. Is there sunlight in the picture? What are the colors in the picture? Are there people? What are the people doing? And just have a [00:36:00] conversation. And at least, if all you get is UGHs or AHs, there’s great reception. There may not be reciprocity in speech, but there’s a lot going on. And if you stimulate something, maybe things will improve, or at least the person will have more satisfaction in his life.

Jordan Jankus: Unfortunately, the focus is on this, in the educational system, get them ready for graduation, or in the case of special ed, get them through 21, hand them over to the adult system. In the adult system, if he can work, great, we’ll get him a job and we’ll get him a job coach. But for all these other people that can’t do those things, what do we do with them? There’s no formal training or curriculum for any of them, and that is a waste of humanity.

Jordan Jankus: One thing that Jessie uses that, thank God, and this is a great example of it, can she use a computer? It’s hard for her to use a computer. But every day, as soon as she gets home from what she calls work, which is her day program, [00:37:00] I get a phone call via FaceTime. Or her aunt or uncle, or her uncles in Florida, or her uncle in Michigan, all these Irish mafia. If she can’t get one person, she just keeps hitting the button. [David laughing] And she eventually will talk to somebody. And we said, how was your day? And it’s always the same conversation. How many days will I see you? Will I be going to work tomorrow? How’s the baby? And all that. And you just think to yourself, if she was by herself, not being able to contact her family, wouldn’t that reduce the quality of her life?

Jordan Jankus: So there’s just one app, one free app. I didn’t pay anything for it, except get an iPad. And she can manipulate this. Not very well. Sometimes I’m talking to her nose and I don’t see the whole picture, but it’s better than nothing.

David Hirsch: Yeah. I love it. I really admire your vision for this Plastic Learning, which has to do with brain plasticity and the fact that we all benefit. [00:38:00] Society benefits, the individuals benefit, when somebody is engaged, that’s what I heard you saying. And there are systems in place, right? Traditional systems in place during the school years through age 22. And then for those that work, like you said, there’s different opportunities. But there are a large segment of individuals that might not be able to hold down a traditional job or employment. And I think that it’s really important to Identify systems that these individuals, these families, can all benefit from. So from your lips to God’s ears, I’m hoping that this Plastic Learning catches on and develops some momentum. And speaking of that, what role has spirituality played in your lives?

Jordan Jankus: Spirituality, I think we would be lost if we just thought that this was for nothing. I think it’s made both of us much better human beings. My son, he’s never going to be rich, but God, is he the best father in the world? Most compassionate person. And his wife is a wonderful [00:39:00] mother and they value their children so completely that I just say, maybe some of that rubbed off from his parents, that’s great, and from what he saw with Jesse. That has absolutely been a blessing. And now Jesse, when she visits, he’s like father number two. She listens to him more than to me. Yeah, there’s been a lot of good that’s come from this.

David Hirsch: Yeah, God does play a really important role in our lives, and sometimes it’s easier to acknowledge than others. I’ll just leave it at that.

Jordan Jankus: Yeah.

David Hirsch: Why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Jordan Jankus: I think I can bring a lot to other fathers and men. When Jesse was young, we went to a father’s group – the mothers went upstairs, the fathers went downstairs – and men have a hard time talking about this stuff, just emotions and all that. I’m not talking about finding the best physical therapist. I’m just saying are you happy today about this, or do you just say this really sucks? And I’ve seen plenty of [00:40:00] circumstances where it divides a marriage, where one of the partners in the marriage denies it happening. That kid, ah, he’ll grow out of it. Or, he’s not as bad as he looks. And it becomes this point of friction instead of saying, let’s unite about this issue that’s right in front of us and try and find a solution and nobody’s to blame. Nobody’s to blame. I think I can be of service, just like I hope Plastic Learning can do something for other people. At 73, God knows how many more days I have ahead of me, but I wouldn’t want to think that all these years have been for nothing, that I can share some of my wisdom at this point.

David Hirsch: Yeah, we’re thrilled to have you. You are the deep end of the pond when it comes to experience, and I’m hoping that you’ll be able to connect with quite a few dads in the network.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Jordan Jankus: I thank you for this opportunity and just remember everybody keeps learning no matter who they are and each day is a new opportunity to just keep moving and [00:41:00] nobody is static.

David Hirsch: Yep. Words of wisdom. Thank you. So let’s give a special shout out to Faye Simon-Harac at Special Parent Magazine and SFN Dad to Dad Podcast interviewee number 286 for helping connect us.

Jordan Jankus: 286, I’m impressed.

David Hirsch: If somebody wants to learn more about your work or to contact you, what’s the best way to do that?

Jordan Jankus: I’ll give you a URL, maybe you could share it. PlastLearning. substack. com.

David Hirsch: Excellent, I’ll be sure to include that in the show notes, so it’ll make it as easy as possible for somebody to follow up with you.

Jordan Jankus: Great, thanks.

David Hirsch: Jordan, thank you for your time and many insights. As a reminder, Jordan is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads. org.

David Hirsch: Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st [00:42:00] Century Dads Foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Jordan, thanks again.

Jordan Jankus: Very welcome. Have a great day.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story [00:43:00] or know of a compelling story, please send an email to David@21stCenturyDads.com.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.

Tom Couch: Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com