033 – Lee Jorwic, a father of an autistic son, creates opportunities for the disabled.
Lee Jorwic, a manufacturers sales rep tells about his life with an autistic son and how facilitative communication has allowed Chris to share his thoughts with the world around him. We’ll also hear about Lee’s work as Chairman of the Board of the Ray Graham Association, creating opportunities that empower people with disabilities. That’s all in this Special Fathers Network Podcast.
Dad To Dad 33 – Lee Jorwic, a father of an autistic son, creates opportunities for the disabled.
Tom Couch: This is the Special Fathers Network 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 connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.
Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.
David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast stories of fathers helping fathers.
Tom Couch: And I’m Tom Couch in this Special Father’s Network podcast. David Hirsch talks to special father Lee Jorwik.
Lee Jorwick: People need to see feel that there’s some hope,
Tom Couch: a manufacturer sales rep and chairman of the board of the Ray Graham association, empowering people with disabilities to reach, grow, and achieve.
Lee Jorwick: We’re a service provider. We’re about a $23 million a year service provider providing services with people. Well, disability
Tom Couch: Lee and his wife, Terry are parents of four grown children. Nicole, Michelle, Luke, and Christopher who’s autistic.
Lee Jorwick: One of the gods says that Terry and I have is we know that as long as we can help provide financially for Christopher, his siblings will all, all take care of him.
Tom Couch: We’ll hear Lee’s story and about life with an autistic son, including using facilitative communication. Allowing Chris to communicate with the world around him and share thoughts. No one knew he had.
Lee Jorwick: I grew up my father’s dead or scared, confused. Even more than me. I do that. My siblings, my siblings would laugh. Smile. And dance for me until I was fouled. Wow.
Tom Couch: It’s the story of another amazing family and dad in this special father’s network podcast. Here’s David Hirsch.
David Hirsch: Being a father is very important to me. I’ve started a number of charitable organizations designed to increase the role of fathers. One of them, the Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs.
We’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.
Tom Couch: All right. Let’s get to it. Here’s David Hirsch’s conversation with special father Lee Jorwick.
David Hirsch: I’m thrilled to be talking today with my friend Lee Jorwick of Elmhurst, a father of four and a manufacturer sales rep Lee. Thank you for taking the time to do a podcast interview for the Special Fathers Network.
Lee Jorwick: My pleasure David,
David Hirsch: you and your wife, Terry have been married for 39 years and are the proud parents of four children.
Nicole who’s 34, Michelle 32, Christopher 29, who has autism and Luke. 27. So how would you describe your relationship with your dad?
Lee Jorwick: Well, my dad and I, when we were young, when I was young, I should say, well, he was young too. Um, we got along, but. He was kind of the old school came out of world war two. Didn’t speak a hell of a lot about anything that went on and, you know, it was more of a task masker.
My folks ended up getting divorced when I was, uh, let’s see. After 28 years it was, I was 24. Cause it was one week before I got married. And uh, so that’s how I remember it. But, um, It was, it was tough because I was the oldest child and I also got along the best with my father because I had better recollections of everything.
And, uh, I’ve, I’ve often thought that my parents got divorced just because it was one of those situations where they should have never gotten married. That’s my opinion. Anyway, and my father is now 94 and still living and, uh, uh, you know, enjoy it. Company, he’s cantankerous old Polish guy. And so my, and she likes to remind me, my mother is 87 and she lives in the area too.
Both my parents remarried and had long marriages afterwards. So, uh, as a family, we’re still very close all my siblings and both my parents. So life goes on. His biggest frustration is, you know, like anybody of his generation in Saudi used the computer properly. And unfortunately for him, I can’t help him very much.
He’s got to go to one of my kids to have figured it out. He knows better than they ask me.
David Hirsch: Well, 94, that’s really a blessing that he’s still alive. Not that many world war II veterans that are still with us.
Lee Jorwick: When I was growing up, I had, it was influenced by. Both my grandfathers, most, mostly my maternal grandfather and my dad would, would always make a point of we’d go out and help and do things around their house, his house.
And he came to this country and became a tailor by trade. He fought in world war one. My dad’s dad. You know, he lived with the tough life. He was a blacksmith. Uh, he worked in, in the coal mines and, uh, bell was back in the day when, one time as an accident on work, he, uh, sender took out his eye and he was told when he went home that, you know, make sure you’re back here tomorrow, or you’re gonna lose your job.
So. I was always impressed, you know, I’m Polish, uh, and I’m very proud of that. And these are the backgrounds and memories I had of people having to earn their stripes. And, um, and it’s, it’s served me well in my career about a work ethic, understanding that you have to put in your time to learn a trade.
And, you know, there’s going to be times that you don’t like it, but you gotta deal with it. And, uh, I’ve been very fortunate that I’ve been able to, uh, transfer that kind of work ethic all my soul. It has a honorary by grandparents. Um, it’s been important to be honoring my grandparents. It’s been very important to me to transfer that kind of work ethic.
And certainly my, my wife’s side of the family has the same kind of background. They, when I first met my father in law, he was driving a beat up old Oldsmobile station wagon. He had just gone into business. He had five kids, six, one passed away. Uh, and he was making about 14 grand a year. So, you know, my, we did not come from wealthy backgrounds, but we, we came from families who had a wealth of history.
David Hirsch: Well, thank you for sharing. It’s pretty obvious from the comments you’ve made about your dad and your grandfathers and your other family members for that matter, that work ethic is really important and integrity. And if that’s the only thing you could pass along to your kids and future generations, that would be a real important legacy.
So is there anybody else when you were growing up that served as a fabric? Father figure,
Lee Jorwick: uh,
well, this old gentlemen, when I first went into business, my father in law told me about this job opportunity and sales. And, um, I went to go work for this gentleman. I went for an interview. Uh, I think my father in law kind of told me about it as somewhat of a joke because. He didn’t tell me that the guy was 77 years old at the time.
And I went to go work. I went to interview, I called this gentleman for an interview and, um, he, uh, he said, well, I’m going on Saturday? So seven 30 in the morning. And I said, Oh, that’s, that’s pretty early. Could we make it a little later? So we made it for nine and I went to the merchandise Mart. And, uh, a cheap sport coat and, uh, you know, dress slacks.
And I go to the door and I ring the buzzer and outcomes. This guy’s about five foot two. His name was Walter Jacobson and he’s in a three piece suit on a Saturday morning. And I’m like, Oh, this interview is not going to last very well. Uh, but, um, It ended up, we talked for two hours, you know, I was trying to break the ice, you know, meeting this man for the first time.
And I was asking questions like, so mr. Jake said, how long have you been in the merchandise Mart? And he said, since it opened, and I was like, this is going nowhere. And then about a week later, I got a phone call and, you know, he offered me a job. I want to say at the time, I think it was $9,400. And I just thought, well, this is great, you know?
And, uh, I remember getting my first raise and I got the $10,000, 10, four, and I remember thinking, Oh my God, I’m in five figures, Terry. We’re on. We’re in great. I worked for five years as a salesman before I made as much money as my wife did, uh, she worked for the children’s Memorial hospital in Chicago and, uh, it was, uh, he was a tremendous man.
He told me he would hire me on a seven year probation. And that kind of tied into my, uh, my whole mentality of being, uh, a journeyman and learning a trade. And, uh, you know, they, they made a big deal at five years, you know, they gave me a. Poster boards, you know, said I passed. So, and I worked there until he was 84.
I sick. And, uh, I had two children at the time and, um, or know one child at a time, one on the way, and I just needed to make more money at the time. And I remember going in and quitting and, uh, crying when I was quitting. Cause I like working. This man so much, but I had to do what was best for my family.
And he said, junior, don’t worry about it. You’re going to do just fine. And about two weeks after that, he sent me a beautiful letter. Just telling me that I was going to do five.
David Hirsch: That’s pretty powerful. Well, thanks for sharing. Um, it sounds like he had a real positive influence on your life.
Lee Jorwick: Yeah.
David Hirsch: So, um, you went to school at the university of Illinois.
You took a degree in poly size. We, uh, are both fighting alumni and I’m sort of curious to know, um, how, how did you meet Terry?
Lee Jorwick: Well, she ended up, she was at U of I to, and actually my older daughter off also graduated from there. So we’ve got orange and blue. It’s a sickness, but, um, we, uh, I met Terry. She was working in the coffee shop or the Sears Oprah retail store.
And a friend of mine was also working there in the kitchen. And she was a 16 year old girl working out in the front. And, uh, she did not like to look at me at all. Cause I would come in to pick up my buddy after she had cleaned up. But at the time I was smoking and she would be mad cause I would use an Ash tray to dirty it up after she had cleaned it.
She wouldn’t date for me for the longest time. And when I asked my friend Terriel Sullivan about this girl, Terry Klatt, he said, I’ll stay away from her. She’s a real weirdo. Don’t even go there. So I tried so hard. I called her for three or four weeks to get a date. And, uh, finally she, she went on a date and I was one of these guys back in the day to wear bib overalls, had a park on when she was mad about ashtrays.
I showed up one Saturday and I pulled out this big egg at Ash trays that I, I brought my own ashtray. So you don’t have to worry about cleaning it up. So I was kind of a screw ball back in those days. And, uh, She ended up going out with me and you know, that was it. We dated for six and a half years. She went away to U of I, I was, I was going to try it and it’s like that, or work nights in a warehouse, earned some money to go to school.
And I went to U of I just because I got sick of driving down there for the weekends and you didn’t have to be a genius to go to U of I back in those days, I transferred in. And I remember Terry was nervous. I had an interview with the Dean and I showed up, you know, I, I had an Afro and a beard and I was sitting on the quad relaxing while my interview is at one and she was sitting there with me.
So she’s still nervous. You ran off by Lincoln hall and threw up in the bushes and back, and I’m sitting there catching tan. And, uh, I guess that’s when I became a salesman because I went in and they said they weren’t accepting anybody. And I said, what’s this you’re a land grant school. I went into the whole histrionics about, wait, I went to Triton, I got straight A’s.
I worked my way. I need an opportunity. You have to have people that flunked out in the last two years, there’s gotta be room somewhere. And he eventually about a week later, he accepted me. I think Terry was nervous, not so much that I wouldn’t get. And I think she was nervous that I would. So, you know, I went on to become student body president at the university of Illinois.
Terry became the managing editor at the LEL. So over time I was getting pretty good press. Uh, it worked out well, and that was back in the mid sixties. So that was a lot of fun. That’s how we met. She’s went into at the time it was called medical records. Now it’s health information management. She worked for a time in the private sector, in hospitals at children’s Memorial.
And then she went to work for her national organization. And eventually she’s been for the past 33 years or so a assistant professor at the university of Illinois. And she’s a. Full time consultant now in that field. And she does extremely well. She’s she’s the brains of the outfit sheet she’s written two or three books revise them two or three times.
Uh, she’s traveled extensively teaching conferences and lectures. Uh she’s she’s definitely the, the brains and the parents of our family that has provided discipline. All our children’s she’s she’s very sharp woman.
David Hirsch: Well, it sounds like you’ve come. A long way from those early days at the coffee shop at Sears Oakbrook.
And I think we both married up.
Lee Jorwick: I
David Hirsch: think that’s
Lee Jorwick: the best way, the best way I could phrase it.
David Hirsch: so let’s switch gears and talk about special needs first on a personal level, and then beyond. What was your first reaction upon learning of Christopher’s diagnosis with autism at age two and a half?
Lee Jorwick: Well, we really didn’t find out when Christopher was two and a half years old was see, that was so early nineties.
There was not a lot of information about autism. And it took us over. I want to say almost a year to finally be diagnosed. You know, he’s early on. He was, he had a typical kid, he had about a hundred word vocabulary. We were doing some construction on our house and he was sitting in the window and say truck, and you know, all that.
Uh, he had two older sisters that were, you know, as young women, you know, their verbal skills are a lot quicker. So, you know, we were told by pediatricians early on, I don’t worry about it, you know, and then he just kind of escaped off into a world. We didn’t know what was going on. And we taste doctors all over the place, but people weren’t that quick to give a diagnosis.
I think we eventually just came around to the fact that they would call it, I think, pervasive developmental disorder. And that was kind of an umbrella diagnosis, which basically meant they really didn’t know what was wrong with them. My wife was always, the educator was always the one that was spearheading, trying to figure this whole thing out, did a lot of research and a lot of stuff.
Fine line. Became aware of a gentleman named Stanley dr. Stanley Greenspan in Bethesda, Maryland. And we went out there and he had a group of doctors who work with behavioral therapists. And that was where we clearly got our direction of autism. But even Stanley said, make sure you keep using the diagnosis, even gave us the code for pervasive developmental disorder, because then you can get.
Some insurance money, but, uh, autism, it was something that was not covered by insurance. So Stanley was very good for years. Then we would go to Stanley sometimes two, three weeks at a time. It was quite disruptive because we had. At that point, we had four children, two older sisters and a younger brother, Luke.
And, you know, we would have to pack everybody up. We became very close friends with the folks at a very at residence in that far in Bethesda, because we, they, we would spend a lot of time there. We had a grandma’s cousins. Friends would come
David Hirsch: and watch the other kids
Lee Jorwick: and like any parent back then, we wanted to find a cure for this.
Uh, you always think of your child, that they have some kind of an illness. This has gotta be a cure because that’s the way we look at any kind of a disease. Right now it’s one in 58. People I think are children are afflicted with autism or, you know, on the spectrum of autism back in those days, it was one in 1,100, 2000.
So it was all networking. Pediatricians didn’t even know what the heck it was. So cure autism now. Primarily was a fundraising thing created by parents that were trying to find a cure for autism. It was, you know, and we wanted to do it now because our kids were young and we wanted to take care of it. So I got involved with the group here.
Uh, I was in my own business at the time, so I got involved. They actually would cure autism. Now I would go for leadership groups and how to form more. Four more different, uh, open up and new cities get more parents involved. Uh, and then that was kind of co-opted by autism speaks, which was founded by the, uh, former chairman of the board, I believe of general electric or something, but he was very powerfully connected.
David Hirsch: So let me backtrack a little bit, um, um, the advice you got early on. Uh, the seminal advice you got early on was from this Stanley Greenspan, right? That was really the epicenter for you learning about, uh, before time and things that are helping Christopher advance. And I’m wondering if there were any other important decisions that you and Terry made early on, uh, raising four children, including one with special needs.
Lee Jorwick: Well, The biggest challenge we had was what to do with Chris, because he had regressed to the point where he, he still nonverbal. Uh, but he was this beautiful young child at that was we followed was just slipping away into the abyss. And my wife, God bless her. She started ABA therapy. Advanced behavioral analysis was just becoming an item.
And Terry contacted Elmhurst college that has speech therapy department. And Terry started soliciting our own different students that would come in and be ABA therapist. And for seven to eight years, we did ABA training in the basement of our house. Oh well, to try to help, you know, basically get Christopher back and I was just.
You know, getting more and more involved in my company. I traveled a lot, which also put a strain on our family situation, but it was at that point that really, I started to feel that I had to get more personally involved in what was going on one for our children’s sake. But more importantly, Terry was just doing an awful lot on her own.
And I just knew that, you know, I kept saying, well, I’m a salesman. I guess I could, you know, I get involved, I could use my God given skills, but then I needed to start getting involved on a more personal level. You asked the question about raising other children. We started spending more time individually with our other kids because somebody always has to be with Chris.
So we started Terry and school. Started spending, you know, special weekends individually with our other children. So because our kids, you know, Chris, his biggest strength right now at this point in his life is that he’s got a older sister. Who’s 34, she’s the policy director of policy for a national organization, for people with disabilities.
She’s a trained attorney. She has the passion of her brother. As a motivator for everything she does, she’s extremely successful. She lives in DC and he has another sister who’s director of academic services at Northwestern, Illinois, who lives seven blocks from us now with my wonderful son-in-law. And they recently had a, I think he’s five months, Samuel will be five months tomorrow.
David Hirsch: This is your grandson.
Lee Jorwick: This is my grandson at first. First on both sides. Congratulations. That’s exciting. Tremendous, tremendous. Yeah. That’s Michelle’s Michelle’s son and Mattson and, uh, they are deeply love Matt. Uh, actually, uh, they named Samuel. I might get emotional hair, but his middle name is Christopher and that was dealing with Matt’s idea.
David Hirsch: Um,
Lee Jorwick: so Chris is very close with. Their family. And then my son, Luke, who we used to always called little bit brother, because he was always very instrumental in helping Terry around the house. And all my kids were involved in student government. Every one of them was either president or class or something, president of student government or PRA.
I mean, they’ve all, uh, they’re all very dynamic, strong individuals. And, um, they, they have a passion for their brother and a deep love for their brother. So one of the God, the God says that Terry and I have is we know that, um, as long as we can help provide financially for Christopher, uh, regardless. His siblings will all, all take care of him.
Uh, and we’ve set up trust, special needs trust to do that. I know you’ve worked with Brian Rubin as one of your fathers. We’ve known Brian for a long time. We set up our special needs trust many years ago. So. Well, the other thing that motivated D as I talked about eight years of ABA training, you know, we were paying three or four different people.
We were paying all that stuff out of our pocket. And fortunately we were in that thing. And I think what motivates me more than anything else. You know, and I, and I, I’m not a wealthy man by any means, but, uh, we were always able to provide what was necessary for Christopher and in my, uh, experiences with people, it cure autism now.
And even with Ray Graham, who I work with now, uh, there’s a lot of people that need a lot of help that just don’t have the financial resources to take care of this kind of stuff. So I think as a personal motivation for me, I’ve always felt that because we were so blessed. To have that ability to do that ourselves when insurance didn’t have anything to do it couldn’t help you, that it was imperative to try to do as much as I possibly could to help other people who really need help.
It’s a tremendous strain on people’s relationships. It’s a tremendous. Strain on siblings, relationships and people need to see and feel that there’s some hope, uh, in their, in their journey with autism. And I think that’s probably been my personal strongest motivation.
David Hirsch: Well, one of the things I find remarkable is that, um, you and Terry were focused on doing whatever you could to help.
Christopher provide whatever resources, training people in your basement. Um, so it went beyond, you know, what Saint Christopher’s best interest to also keeping an eye on your other kids, doing things one-on-one with them, nurturing those relationships. So they didn’t feel like all the family’s resources were going to Christopher.
And then you interior, you have this on your heart that. You know, you want to help make it easier for other people, perhaps people that didn’t have the financial wherewithal like you have been blessed with. And I think that’s, what’s most remarkable about your story. And I think it’s just a great testimony to hear you talk about Nicole and Michelle and Luke, um, and how close they are to their brother and how it has impacted them as, uh, young adults now.
And even, um, with Nicole advocating, like she does. For the arc as an attorney in Washington, DC. So, uh,
Lee Jorwick: you’ve done an extraordinary
David Hirsch: job. You and Terry have of raising these, uh, young adults. And, uh, now they’re, uh, off with their own families. And
Lee Jorwick: one of the blessings is that,
David Hirsch: you know, you’re experiencing what not everybody gets to experience is to have grandchildren.
Lee Jorwick: Yeah. Yeah. It’s uh, it’s certainly a blessing. There’s no question about that.
David Hirsch: So I think in a prior conversation, you mentioned that, uh, Christopher has a girlfriend and I’m wondering if you could tell me a little bit about that?
Lee Jorwick: Well, Kathy Carol. Who the gal, the woman that she’s the former president CEO of Ray Graham was always trying to get me to get involved with Ray Graham, but I really didn’t feel I could serve two masters at the time.
So I was so deeply involved with first cannon autism speaks, but she, she lived across the street from my brother-in-law. We would run into each other and, uh, she has a beautiful daughter, Beth who’s I think a year or two older than. Chris, but she also has some special needs. She’s much more verbal and much more independent, but she had Chris over the years have just developed a nice little bond, a strong friendship.
We share birthdays and holidays. As a matter of fact, We’re going to Illinois football game on Saturday with bested, her folks and Terry and I, her father actually was born in Champaign-Urbana. So that’s yet another, another tie in. Okay. But, uh, So we share that and we go to basketball games down there, and it’s nice that the two of them have a, a, a strong friendship with each other and that they feel understand each other because they do have special needs.
It’s very nice.
David Hirsch: I love it. Thank you for sharing. So let’s talk a little bit more about Ray Graham association. Um, from what I recall, the organization’s been around for 56 years and they provide. Services to infants through, you know, adults who are in their later years. Um, so
Lee Jorwick: yeah, that’s, that’s one of the reasons that, you know, I had, uh, Terry still served on the board for autism speaks after I had left.
And then I started getting involved and served on the board. I think it’s been about, I don’t know, 13 years now, something like that. . I’m currently in my second year as chairman of the board, I will be put out to pasture next, next, uh, July as the, I don’t know what they call us afterwards, but we’re still chairman Ameritas is for a year.
It’s a great organization. Yes. I was drawn to this because it, this is at a time when I was starting to concentrate more on what would happen to Chris in his adult life. And we were also getting very close to the end of the year. You know, once you’re 22, you fall off the cliff. So to speak with any kind of educational services and, uh, Ray Graham, much to our deep.
Appreciation started a program called monarchs for people with not only autism, but braid grab serves not only people with autism, but people with physical disabilities, people with down syndrome, people with other intellectual disabilities, people with cerebral palsy, you know, our, our whole mission is.
Providing services to empower people, to reach, grow, and achieve whatever they can in their national, in their world, based on their, uh, as opposed to disabilities, like to call them special abilities. So we have. Early intervention programs are important. Part of our services are respite services for people that just need a break to get away for a weekend or go shopping or do whatever.
We, we maintain a facility where people could stay overnight
David Hirsch: alone. Let’s take a step back. There’s more than 30 facilities.
Lee Jorwick: There’s 33 facilities, I believe in the du page County, which is a Western County of Chicago. So
David Hirsch: that’s the footprint for Ray Graham is two page County. It’s
Lee Jorwick: a hundred percent, but basically that’s it.
Yes. We do service people from outside of du page County. We’re a service. We’re about at $23 million a year service provider providing services with people with disabilities. Most of our funding comes from Medicare, Medicaid, and state and the County. Uh, we’re about 10% shy every year. So we do a lot of fundraising that we need to do to maintain a level of quality that we provide these people.
There’s a group called CQL, which is certified qual. I think it’s certified qualified leadership, but it’s a worldwide organization that accredits. Agencies such as ourselves. And we are, uh, of weeds. We received the highest awards every year for the way we, we treat our, our, our clients and our people. And that’s something as a board member.
And now as the chairman of the board, I couldn’t be more proud of because Ray Graham has a fantastic board of directors, attorneys, lawyers, insurance, there’s three or four of them. Parents like myself that formed the core of a very passionate leadership for this organization.
David Hirsch: So let me ask, um, who was Ray Graham?
Lee Jorwick: Ray Graham, uh, was actually the first person. He was the first director of special education in the state of Illinois. And the organization was founded as old as I think I am, I wasn’t around at the time, but he, uh, It was a group of families with people with disabilities, wanting to provide services for kids.
And we provide services for 2000 families, 2000 individuals. And what I like to say is that’s for probably about if you’d take it to the parents and the grandparents and the siblings we’re helping probably 20,000 to 30,000 people a year. Deal with family members and friends that have either intellectual or physical disabilities.
And that’s, that’s a big footprint.
David Hirsch: So Ray Graham, you indicated has 33 facilities. Could you give me a rundown on. How that sort of breaks out and what each of these facilities, uh, provides?
Lee Jorwick: Well, we have about 18 to 20, um, Sillas community integrated living arrangement. So these are residential facilities.
They’re either homes in neighborhoods or, uh, apartments. We have a. Specialized learning center, which provides services for about a hundred people that have physical disabilities. And then we have three CLCs throughout the County that where people go for day services and activities. We also have due to the fact that people with special needs live typical lives.
We actually started about six, seven years ago, probably even longer a, uh, Alzheimer’s offering for people with Oh, because when they just like any typical people, we have a certain amount of our population that needs, you know, Alzheimer’s and dementia services. So. We try to treat individuals from, you know, the cradle to the grave, with services to help them lead as meaningful life as they possibly can within our communities.
Illinois is, uh, one of the. Few States is still have institutionalized care for people. And, uh, for every person that is in a statewide tuition that costs the state about $225,000 a year. Unfortunately for every one of those people, we could provide services for four people. In a community integrated living that affords them the, the respect and participation as a member of a community, as opposed to an institution.
So still an eye that’s probably going to be my lifetime goal. Um, whenever I decide to, uh, retire, but, uh, you know, three, four years down the road, I would like to make sure that we start to become there’s 17 States in the country that have absolutely no institutions. And all of their people with disabilities are in community based settings, which is really the most financially practical, but more.
The most, uh, compassionate way for people with disabilities to be a part of their communities.
David Hirsch: That’s wonderful. I think I remember you telling me something about the Hansen center. What is that about?
Lee Jorwick: Hanson center is a, or is a facility that we have. Uh, in Burbridge, it’s a seven and a half acre facility and that facility has, it’s totally surrounded in a community.
Uh, we have horse barn there. We have horse training. We have therapeutic horsemanship for people, uh, for. That’s another service we provide. We have dog training facility where people are given service dogs. We have a huge community learning center is based there as well. We just had an activity there two weeks ago for the advocacy group within our organization that goes to Springfield, all members of our clients that we serve, that that are self advocates, my son being one of them.
And, um, Uh, there’s a barn there there’s animals. The community comes in and it’s a, it’s a classic example of a facility where the local community shares it as a park, just like we shared as an activity center. And we’re in the middle of a big road, uh, cleaning up horse trails and such making it more conducive for people to take walks on the weekends.
It’s a tremendous facility. It’s really one of the hearts of our organization. It really is something that sets us apart
David Hirsch: from a lot of others. It’s a fabulous resource. And you said it’s not just for people that are associated with Ray Graham, but it’s open to the community.
Lee Jorwick: Yeah. We encourage community to use it.
I mean, it’s kind of what we sent her, our whole purpose on with people. We don’t want people to be put away. We want people to be a part of a community.
David Hirsch: Yeah. Well, I think it’s fabulous. It’s about inclusion and acceptance, right? Which is. Common theme that I hear you make reference to. So I’m wondering under the banner of advice, what are some of the more important takeaways that come to mind when raising a child with differences,
Lee Jorwick: Nate, be as much a part of your family and their siblings lives as you possibly can.
Uh, don’t make the other siblings feel. And I know my children over, you know, from time to time always felt. Why are we going besides the, for three weeks? Why do we have to do this? Do you know? You know, we, we, you know, we, we, like I said, my wife and I enjoyed personal one on one time with all of our children going on different vacations.
My daughter was the athlete. We went to Lake Placid one year, cause she wanted to see where the Olympics were held. I’d been to Europe on occasion with my kids. All my kids have spent long weekends. New York on several occasions with either Terry or myself, it’s a cheap plane ticket and we get to see a show and we have a lot of fun together.
I’ve taken the three kids to Colorado for a crazy week of all kinds of different activities. Terry’s. Done a lot of different things with the kids. So I think that’s, that’s really important because in the longterm you’re going to die and you’re not going to be around. And you don’t want to totally be entrusted to have your loved one, not have a personal family member or relationship with family.
To serve them in their life. And our kids feel strongly about their brother and also the mission of organizations like Ray Graham, the arc, um, and the importance of trying to do things for other people. Well,
David Hirsch: that’s fabulous. So I’m still under the banner of advice. I’m wondering what advice you might be able to provide dads who are raising a child with a physical or intellectual disability?
Lee Jorwick: Well, My biggest challenge, uh, to this day is my wife, but more of myself has a tendency to enable Christopher more than challenge him. Uh he’s 29 years old. He still has some, uh, hygiene issues learning to cook two different things. If it was up to my oldest daughter, Nicole, Chris would be probably doing anything because his, his siblings are much more challenging to him or challenge him, I should say, not challenging to him and forcing him to do things where.
You know, if I’m in the morning, I’m helping Chris get ready so he can go to a program or do something, you know, I’m more up to help them dry off when I shouldn’t be, um, help do more things, wash his hair instead of spending an extra three or four minutes, make sure he’s doing it himself. So I think. That as my children have gotten older, I’ve learned more from them, the importance of challenging Chris to do more for himself, as opposed to be the doting father that wants to do as much as he can for his child is that’s not going to do them any good when I’m gone.
David Hirsch: Yeah, well, it’s a really important point that you’ve raised, which is it might be quicker and more efficient for you to do things than to take those extra couple of minutes here, an extra couple of minutes there and kind of push the pause button or slow down and think about, well, what are the implications?
Of enabling him to use one of the phrases that you had used, and that must be hard, right? Cause uh, you know, you want to be there for them, but being there for them and doing things for them is different than thinking about, well what’s in his best interest longer.
Lee Jorwick: Well, if you think about it, it’s like any of our typical kids, you know, you can only do so much and eventually, you know, you gotta let them go off on her own and make their own mistakes and do their own things.
And you know, that’s certainly the way. Our three other children have been raised in, you know, you, you, you start out not feeling like you’re coddling a special needs child, but in a lot of ways you are. And so it’s probably something I’ve learned from my other children more than I’ve learned from myself, Terry and I talked about it on a regular basis, you know?
And she’ll say, well, you think, you know, because we know we both do it. So we’re getting much better at it, but I think that certainly something I’ve learned on a personal level that I need to work on more and more.
David Hirsch: So, uh, crystal lives at home. Um, is there a plan to have him live independently or live.
Separately from where you and Terry are.
Lee Jorwick: Well, we’re starting to do program where we’re going to have, what’s called a family, uh, a Homebase Ceylon where Chris will be getting services through Ray Graham, but it’ll be based in our home. Not all people. Depending on their individual circumstances can live in a group setting.
It would be our goal that eventually that would be the case, but until Chris gets to a point where he has achieved certain independent. Abilities that he needs to work on. And he’s the one that he even types with us and tells us he needs to do that. So Chris is very aware young man as to what he needs to do.
And I would like to talk about the facilitative communication a little bit if we have time, um, because that’s been a tremendous thing, facilitated communication, isn’t communication. Program that enables people to, with facilitation, with help to be able to type. And it’s something
David Hirsch: that’s like an iPad or a computer that is communicating he’s nonverbal.
So one of the most effective ways that he can communicate with you is to type a,
Lee Jorwick: not until the time. He was 17 is when we were first exposed to this. Terry had heard about it. It’s, it’s something that is not controversial, but it’s not widely accepted because, uh, you are initially holding the person’s hand, helping them go to the keyboard.
But it’s really providing resistance and forcing the person to communicate with Chris was first exposed to this. They came out here and he was 17 years old, Terry and I went to some facilitators out of Syracuse, New York, several of which we confronted with this is a dozen years ago
David Hirsch: now.
Lee Jorwick: Yeah, this is a dozen years ago at Chris.
You know, if your child was sick, You could tell they were sick, but they couldn’t tell you what was wrong. Uh, and there, all of a sudden was facilitation. You know, Chris was included in his classes. He was never tested. He was never able to communicate. He would just sit there with an aid and we always kind of knew he knew what was going on, but he was never able to express himself.
So here we go. We’re sitting there on a weekend. And they’re starting out with stuff like Chris wants you to associate, I’m going to name a city. I want you to associate the baseball team. We’re sitting there on why you’re a boss. He types red stock. Do you are sorry, Mets fans, uh, you know, Atlanta Braves chills, just to think about it.
And we’re sitting there, Terry and I are a guest. We’re like what that, you know, and the scariest moment was what. Uh, Terry and I have to be Democrats and they asked them, well, Chris, what political party do you most associate with Tara? And I were like, Oh no, here we go. Fortunately type Democrat, but be that as it may, it was an eye opener.
And I started going, we started, I would go with Chris, we’d get in the car and we’d drive to Syracuse and go to a training class for this getting. Or involved in my daughter to call to her credit was always the one that was most adept at it. And it’s very typical for people with facilitated communications.
Like any other kids. They really don’t want to deal with it. They don’t want to talk about the most intimate situations with their parents. They want to, you know, put a sibling is something else. So the call became very good at it. And as his older sister and somebody who, you know, was very involved.
What’s the delay disability community. She started forcing him to go to cause self-advocacy they started going to the high school where he went to when he was a student and they would talk, he would be able to talk to his teachers and it was just mindblowing. And there was, uh, he was able to, he actually had a little blog that he does.
He types on a very regular basis. When he was doing he’s training, it was really eyeopening for us because that’s when they start saying things where, you know, it’s a whole different cadence. It’s a whole different way of talking. And even when I’m facilitating with Chris now he’ll answer things that I was nothing I would have ever thought he would answer.
So he has taken this now to a new level. They call it fading. You start off by holding their hands. Then you solely go up past the wrist to the elbow. I’m like behind his elbow. Now, Michelle, Nicole, his older sister’s almost to where you just put a comforting hand on the shoulder. And he, he used to be like arm wrestling, but now Christopher is doing more and more.
And as you fade people that are skeptical, become a little bit more, they start coming around to thinking that maybe there is something to this, you know, Chris was able to, I’ll give you an example of something, Chris type when he was at a training session, because it speaks to, I think you asked me a little bit earlier about.
You know, what advice would you give some young parents with special needs, especially a child with autism. You just have to have a deep faith that your child is, is there that, you know, somewhere in there, that person is attentive. They’re very attuned to your emotions. They’re very sensitive people and you can’t treat them.
Otherwise, regardless of what you may think, noises, they’re making whatever, uh, frustrations they’re having, you know, they they’re there and you really have to understand it because of facilitate cues. He talks about things like, uh, people, they find it strange that I have memories from when I was so young, but when I got trapped in my body by autism and lost my voice and my smile, I replayed all those members like videos, then.
Bye, bye. So that I would get lost forever. I do. Even at that age, did I hit the whole line of my family? And if they would help me out, I do my bother. Dad were scared and confused. Even more than me. I do with my siblings. My siblings would laugh. Smile. Singing dance enough for me until I was fouled.
David Hirsch: Wow.
Lee Jorwick: This is he’s talking about when he was three and four years old. What I found, what I definitely enjoyed too was when he was starting to give advice to these teachers, uh, I wanted to tell you that every student with autism was just trying to find a way out. So be patient, it was so important for you to have high expectations.
So each of us have a chance to reach our potential is important to realize that every behavior or outbursts may be a cry for help.
David Hirsch: That is stunning.
Lee Jorwick: So
David Hirsch: it
Lee Jorwick: was very painful and Chris could start expressing himself and I’ll give you an example. Uh, Something as silly as academics, everybody takes a constitution test when you were in high school.
So Chris is sitting there in a constitution class in the back of the room, just stipulated waving his arms, stabbing, you know, talking outbursts. And, you know, everybody’s just kids in the back of the row. So they do a simple adjustment to the constitution tasks where he can’t control his fingers that much.
So he can’t write a, B, C, or put a circle. So they just take a quadrant. They will pay the C D. Four squares on a piece of paper. Well, it ends up, he scores a 96% on this kind of test. And the teacher was like, all my God, I didn’t realize, you know, and it all, that is a simple accommodation to a student with special needs.
Who up until that time, just sat in the classroom, not participating at all in the academics of the so, you know, I guess. I’m using these examples just to tell people, you know, your child is there and, you know, have that hope and, you know, uh, facilitated communication is not for everybody, but it’s certainly an Avenue.
Uh, Terry and I kind of always lived on the, the, the message we always wanted to have for each other was first do no harm. And God knows we’ve tried some oddball things over the course of our lives because you, you. You want to hope that the next thing you hear about is going to take care of it. But, uh, this has definitely been a God send to us and, uh, to our family.
And more importantly, it’s been a godsend for Christopher because how would he have been able to express himself?
David Hirsch: Yeah, well, it sounds in a word. Like a liberating experience, right? You’ve somehow been able to unlock, you know, what’s going on in Christopher’s world, which he previously had no way of communicating.
So like you said, it’s not a silver bullet. It isn’t for everybody, but you’re the second special father’s network father podcast. Dad, if I can refer to you as
Lee Jorwick: such, who’s
David Hirsch: singing the praises of facilitated communication, you and rabbi Bradley arts and out in LA, um, have just shared the almost same exact story.
That up until that time, there was no way for your son or their son to be able to express himself. Yeah. And what a revealing experience this has been
Lee Jorwick: well, I’ll give you there’s one downside to it. And that’s, you know, up til the time Chris was 17, he never talked back to me. I was always the nicest thing.
One, one, plus. Of him not being able to communicate. He’s never bounced off to me. And now he has a ball off to me and telling me whatever’s on his mind, especially when he’s typing with my daughter, Nicole. Now another example was this was about three, four years ago. We’re sitting around and I think it was his birthday.
And we said, Chris, what would you like for your birthday? And he typed, I want to go on a trip. With my siblings, no parents and Terry and I looked at each other just started laughing and all his siblings were there. So the next thing we know, we put together a vacation for them to go to key West Terry and I looked at each other and said, you know, we’ve always wanted to go to QS, but I guess our kids are gonna go and said, and it turned out they had a great time.
A lot, a lot of nice memories for them and Terry and I quite honestly, I’ve mentioned respite before. We’re both laughing. You’re guys are going to go with Chris for, for four or five days and we’re going to be home alone. Geez. They’re terrible
other advantages to it, but. You know, that’s an another example of Chris communicating with his siblings. He’s a wise guy, he’s got a tremendous sense of humor. Uh, he’s engaging with his younger cousins. He loves pontificating at family groups. You know, we’ll pull out the thing and he’ll talk and, uh, It’s he gets involved with political discussions with causes and siblings, and he’s a part of the family.
David Hirsch: I love it. I love it. Thank you so much for sharing. So I’m sort of curious, why is it that you’ve agreed to be a mentor father as part of this special father’s network?
Lee Jorwick: Well, I think, uh, as I said earlier, I feel that, uh, people need to have the need, the ability to talk to somebody, you know, I’ve, I’ve had opportunities.
Uh, one thing I will say that autism speaks has done a tremendous job of is putting together a packet of what they call the first 100 days. So you could, now you could now give people direction as to. What to expect, how to look for different therapists in the town. There there’s a lot of new things that are available that weren’t available.
Uh, one of the gals that works with Chris right now is a certified ABA therapist. Now there’s programs and schools now offer this and there’s treatments, treatment organizations that you can go to. So there’s more resources, but boy, it’s daunting. When you first hear those words, you don’t have. No clue what the hell is going on.
David Hirsch: So let’s give a special shout out to our friend, Stacy and Mike McManus for putting us in contact with one another.
Lee Jorwick: Yes, absolutely. They’re wonderful people. They’re good life, Walter France.
David Hirsch: Is there anything else you’d like to share before we wrap up?
Lee Jorwick: Uh, just for people to have hope and not lose hope is probably one of the most enduring things, uh, that keep people moving forward for their further child or friend or sibling.
Uh, the other thing is to, uh, have a good sense of humor. A lot of families get torn apart by this stuff. But, uh, it’s, it’s really, uh, it’s really hard to maintain a, a good sense of humor and we’ve been blessed. And the other, the last thing is always looking in your life for the angels. Whether it’s a family member, any teacher at a school, a special needs, a particular therapist, uh, throughout the course of our lives.
We’ve been blessed with. Gainesville’s
David Hirsch: fairly powerful. In fact, uh, one of the other interviews, um, But I’ve had a chance to do as with, um, a fellow by the name of Kim Rossiter. He goes by rooster. He’s a recently retired, a Marine 25 year veteran. And, uh, his daughter Ainsley passed away at age 12, a couple of years ago now.
And he created an organization called Ainsley’s angels. Right. And all the people that were in Ainsley’s life. Family members and friends, and now all these volunteers, um, thousands of them around the country providing, um, inspiration to those that have disabilities
Lee Jorwick: or who
David Hirsch: riding and running, uh, events. So, uh, I know you’re onto something about recognizing the fact that there are angels in their lives.
So if somebody wants to get information on Ray Graham association or to contact you, where would they go?
Lee Jorwick: Uh, The easiest place would be raised rave.org. And, uh, we have a fairly extensive website that talks about our activities, our services, uh, ways to get involved, ways to donate. We always need money.
David Hirsch: So Lee, thank you for taking the time and many insights as reminder, Lee is just one of the dads who is a, to be a mentor father as part of the Special Father’s 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.
Lee. Thanks again.
Lee Jorwick: My pleasure. Thank you, David.
Tom Couch: The Special Father’s 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 connect with mentor fathers in a similar situation.
It’s a great way for fathers to support fathers. Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21st century dads.org. That’s 21stcenturydads.org.
David Hirsch: And thank you for listening to this Special Fathers Network podcast, stories of fathers, helping fathers.
Lee Jorwick: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again, to find out more about the Special Fathers Network. Go to 21stcenturydads.org, 21stcenturydads.org.