046 – Jon Ebersole, father of twin girls with Cerebral Palsy

Transcript:

Dad to Dad 46 – Jon Ebersole, father of twin girls with Cerebral Palsy

Jon Ebersole: All five of us in my family understand that we would not be who we are today. Were it not for the disability? None of us like that. Amanda and Jessica have disability. And yet that’s the reality as chatting Eareckson Tada says sometimes that disability sandblasts our souls and jackhammers are my pride and fear. And I would not be who I am. Were it not for the disability?

Tom Couch: That’s special father John Ebersole, John and his wife, Peggy have three children, including twin girls who both have cerebral palsy. John is also the senior director of Johnny and France. Serving individuals and families with disability for 40 years.

And he’s our guest on this dad to dad podcast. Here’s your host, David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad and dad podcast, fathers, mentoring fathers filled them with special needs presented by the special fathers network.

Tom Couch: 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 dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or we’d like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: So let’s listen now to David Hirsch’s conversation with special father John Ebersole.

David Hirsch: I’m thrilled to be talking today with my friend, John Ebersol of Oak park, Illinois. I’m a father of three and senior area director of Johnny and friends, a global Christian disability ministry. John, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jon Ebersole: My pleasure David.

David Hirsch: You and your wife, Peggy have been married for 31 years under the proud parents of three children, Ryan 23 and twins, Amanda and Jessica who are 26, both who have cerebral palsy as a result of a very premature birth. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jon Ebersole: Sure. David, I grew up in Northwestern, Ohio in a small town of 3000 Archbold, Ohio, and it was in a farming community. But it’s an important distinction. I was a town kid, not a country kid. And so I did go to the farm quite often. My mother’s farm that she grew up on was outside of town, about five miles. So we grew up in town.

Um, my father was a medical doctor. My mother was a registered nurse and they met in a hospital and, uh, you know, dad found somebody to work, to put him through medical school. So that worked out well for them. The small town we were in was, you know, the good thing is everybody knew everybody. The downside was, everybody knew everybody.

And, uh, my parents taught me about the importance of love and, um, community. We went to church every Sunday and, uh, you had to be sick with something pretty severe, like chickenpox to not go to church.

David Hirsch: So did you have any siblings growing up?

Jon Ebersole: We did. Uh, I have, uh, I’m the youngest of four. Uh, I have a brother that’s five years older, a sister that’s a six years older and a brother who’s nine years older.

David Hirsch: So you’re the baby.

Jon Ebersole: I’m the baby.

David Hirsch: So, um, I’m wondering, how would you describe your relationship with your 92 year old dad? But

Jon Ebersole: I just talked with my dad this week in preparation for this interview, David and told him again how much I appreciated what he did for me. And I, I think that. My relationship certainly has changed in the last a year or two.

My, uh, dad’s mind is working differently than it used to. And he’s someone who lives much more in the present. He’s still very positive, very happy. He is a bright, optimistic person. He lives in an assisted living place in Goshen, near my brother and sister. If I, there was one thing that characterize my growing up with my dad.

And that was time. My dad spent time with me, whether it was playing catch with the baseball or the football, or taking a walk, when he’d come home from the office. My dad exercise before it was in Vogue to exercise, you know, 50 years ago he’d come home and I would wait and hover around and to try to go on a walk with him and did things together like that tennis activity outside.

Okay.

David Hirsch: It sounds like your dad was a pretty active guy. Absolutely. And your point about exercising is not lost on me. Let’s face the facts. He’s 92 years old, right? There’s gotta be something there. Right.

Jon Ebersole: He has eaten well and exercised and yeah, he’s taking care of himself.

David Hirsch: That’s fabulous. Um, is there any particular advice or an important lesson that comes to mind when you think about your dad, whether it was when you were a younger person or maybe a dad.

Yourself now,

Jon Ebersole: I think what my dad did for me, that I find the most important is that he was always encouraging. If he didn’t agree with something I was doing or saying or believing, he really kept that to himself. And now it’s kind of too late to have some of those conversations with him. There are some things from the past, he remembers very well, but others, uh, No, not so much.

So I think that David is that his encouraging too, to me and yeah, he even did it yesterday on the phone when I was on the phone with him, you know, encouraged me and, and he doesn’t really know what I do anymore. And yet he blesses and encourages me and my family. So it’s. Continued.

David Hirsch: Yeah, that’s fabulous.

It sounds like he’s a very positive person, very bright. He was engaged. You emphasized that. He spent a lot of time with you and, uh, you know, it sounds like, uh, his mission by his occupation was to help people, right. You know, help them, you know, get over their issues from a health standpoint as a doctor.

Jon Ebersole: And he was very well. You know, a town of 3000 people, he was known, we were the only Hebrew soul family and he was well known and he was very beloved. You know, he didn’t have any enemies and you know, there’s a shadow side to that when everybody is, is good. And yet he, uh, it was a listener and I can’t try the number of times I would hear him get calls and he would say back in those days, I’d take two aspirin and make a little.

Orange juice slush in the freezer to suck on and, you know, call me tomorrow. If it’s not better, they felt heard that, yes, this is, we don’t feel well. Or my kid doesn’t feel well. And, and he gave them something to do. If, whether whether or not it was really going to help. They felt like, okay, the doctor told me to do this, so it must have been to be going to help.

David Hirsch: I’ve got a plan. Yes. Right. I’m following a plan. That’s great. Thank you for sharing the

Jon Ebersole: abuse, that comedian abuse, that being respected. Loved.

David Hirsch: That’s fabulous. So let’s talk a little bit about your school. Um, you have degrees in a social work undergrad at Goshen college and Goshen, Indiana, and a masters from university of Illinois, Chicago as well.

And I remember you telling me that you spent a year in seminary. What were you thinking?

Jon Ebersole: I had worked for two years after undergrad and I wanted more schooling. I wanted a master’s and also wanted more seminary. I wanted more Bible. I wanted more counseling. I wanted more.

David Hirsch: What a great background though.

Um, I’m sort of curious to know, um, you and Peggy had been married for 31 years. Uh, how did you meet each other? We

Jon Ebersole: met at a, uh, a Mennonite church, Lombard Mennonite church in the Western suburbs of Chicago in their backyard at a picnic. And it was a picnic. We both went to Mennonite schools, she and Virginia and I, and Goshen.

Okay. So. We found out with not too long talking that we had been to two weddings, two to two weddings prior to that. And one of her very close friends married my best friend.

David Hirsch: I knew didn’t really know each other.

Jon Ebersole: Nope. Not at all. Wow. So I was new to the city and she was teaching here, both being kids raised in the country.

She was very cute and still is. And I was looking for someone to do stuff with. And so we did stuff together and kept doing stuff together.

David Hirsch: So how long did you date before you got married?

Jon Ebersole: Well, Date is an interesting question, but we started doing stuff together in one summer, and then we’re married at the end of the next summer.

David Hirsch: Okay. So relatively short period of time. Yeah. Okay. That’s awesome. It’s always interesting how people made. Um, some of it’s very typical and some is, you know, you can’t predict,

Jon Ebersole: but we remind our kids. We were very mature.

David Hirsch: That’s fabulous. So from a work standpoint, I’m wondering where your career took you before you started with Johnny informs 19 years

Jon Ebersole: ago?

Well, I worked several different places doing counseling with families, worked with two Lutheran organizations. And then I worked for the state for a couple of years in an inpatient psychiatric hospital on the West side of Chicago. And then my biggest stint was eight years at Mount Sinai hospital on the West side of Chicago, working with, with folks who were dealing with severe and persistent mental illness.

And that’s, that’s kind of a, the quick version of what I did. So I had had experience with individuals with disabilities as well as their families.

David Hirsch: Okay. So you really put your degrees, your undergrad and your master’s to Rita for care.

Jon Ebersole: Yeah. I mean, my dad happy

David Hirsch: sometimes you get a degree in something and to go to something completely different.

You’re like, wow. No. Where did that come from?

Jon Ebersole: How was making money? Just not very much of it.

David Hirsch: There you go. Okay. Yeah. Well, it sounds like something that you were drawn to. A study and you had a passion for, and you still have a passion for I do, which is pretty impressive.

so let’s talk about the special needs community on a personal level first and then, um, beyond, so before Amanda and Jessica were diagnosed, It sounds like you had a fair amount of exposure to the special needs community. I’m wondering if Peggy did as well?

Jon Ebersole: Well, she actually had, you know, it’s amazing how God orchestrates things and gives us drops things into our lives.

We may not wonder, we may wonder what the head is about

David Hirsch: at the time later.

Jon Ebersole: Right. Elementary education was her undergraduate and her masters. She got a, master’s also at university of Illinois at Chicago in education in reading education. When she was working at an Iowa, she had experienced at a preschool that was, uh, an integrated preschool before its time with, uh, regular ed kids and kids with special needs.

And so she got a, a significant experience there.

David Hirsch: Okay. So, um, unlike most parents who are. Thrown for a loop at the time of a child’s diagnosis, you actually both had a fair amount of experience preparation, if you will. Yeah, we did. I remember you telling me the story when the girls were born 15 weeks premature at 25 weeks each weighing about a pound and a half, that sounds like a surreal experience.

Uh, what were the circumstances and what were the first three to six months? Like,

Jon Ebersole: that’s a great question, David. And I, I think back from time to time, I don’t think I remember very much detail. We did do some recording of things and noting of things that, that it would be interesting to go back to it at times, peg had nothing, um, to indicate that there was a problem with the pregnancy she had, she had back pain, which we know now is early labor.

When Andy called the doctor the next day and we being naive, got dressed and we’re ready to go to work. We traveled together to, to work, even though we’ve worked different places. And the doctor said, stop by the hospital. I want you to stop by the hospital. We thought we would stop by the hospital and then go on to the work.

Right.

David Hirsch: Did you know you’re having twins at that time? We did.

Jon Ebersole: We didn’t know. We were having two minutes and got there and found out that she was well on her way to deliver. And they were able to. Hold off delivery for a couple of days, but that was it. Cause she was pretty far along in her body getting ready to spit those babies out.

David Hirsch: So it was this Mount Sinai hospital was

Jon Ebersole: at Mount Sinai house

David Hirsch: where you working there at the

Jon Ebersole: time was working at Mount Sinai hospital, which is what made the beginning much easier for me to be involved with things. Girls because I was there and my boss gave me, I would see them twice a day. I would go in early and see them before work started.

And then he gave me off the last hour of the day to go visit the girls so that I could be back. And my wife would go during the day. So of those days when they were in the hospital, Amanda, about 120 Jessica, about 160 days, there were only a couple of days that Peggy missed and a couple that I missed.

But we knew we had a friend who was a, a NICU nurse neonatal intensive care nurse, and said that us being there touching them, touching their skin, speaking to them because they had heard our voices when they were in uteral that it was very significant for the babies in this pretty harsh environment. I mean, you experienced it.

You said, you know what it’s like with all the buzzers and the lights and the commotion, and it’s 24 seven. It’s not where you want a baby to be if they don’t have to. And yet it’s great to have those resources. So we learned an enormous amount about things that we had never known before related to little babies, premature babies, and all the things that could go awry with them.

And any amount of knowledge that we had, can’t prepare you for this, you know, to have your baby who you expect to hold and cuddle and love and take home in a day or two, be in the hospital for that length of time, we would call every night before we went to bed and get the update from the nurse. We’d had a church family at the time when.

There were babies born, they would do meals for, you know, a week or two and you know, three or four meals a week kind of thing. Well, they did meals for us for six months. Um, it was just amazing, the support they gave. And back in the day, we, there were no cell phones. We had analog, outgoing messages on our home land lines.

And so what we did. People, we put an outgoing message of update on the girls, on our answering machine. And so people would call just to get the update. They didn’t what they knew. They didn’t want to, they don’t want to bother us, but they would, they would call and get the update on the girls. Cause that there wasn’t no Facebook, no cell phones, you know, and to our younger listeners, they’re, they, they, some of them don’t know a life like that.

David Hirsch: Well, what a creative idea though, so that you wouldn’t have to like repeat the same thing over and over and take all these calls. They were being very respectful of your time and you wanted to, you know, be able to communicate, right? So that was pretty novel, right? What you were doing, people were praying.

Jon Ebersole: And what we found out later was the families would that have little kids, they were the. Persistent reminders about print. We need to pray for Amanda and Jessica. We need to pray for man and Jessica. I don’t know how many times I heard that from parents, that their kids were the ones that were bringing that back up to the family.

So that’s, that’s very powerful. And you know, I, I feel the tears welling in the back of my eyes just kind of talk. And I remember him that community that we would have been just lost without that church community David, because. Her family’s from Pennsylvania. Mine was in Ohio. So there, there were visits, but not on a, not on a day in day out pen.

David Hirsch: Yeah. Well, it’s pretty amazing. I can only imagine what it’s like and maybe why you don’t have a strong memory of each day each week, each month, because it sounded like an overwhelming experience. A lot of those days and weeks had it sort of blend together and play together.

Jon Ebersole: Right. You know, and when raised like Peggy and I were hard work on the farm, you just do what you have to do.

You know, there’s no heroics about it. You do the next thing. And I think that for both of us, and maybe you’re going to get to this, that what wasn’t engaged was the emotion, you know, emotionally, I was not aware of what was going on, but that wasn’t new. Cause I had. That’s how I have grown up.

David Hirsch: Keep your emotions in check, right?

Absolutely. So you can be focused. And what emotions

Jon Ebersole: are you doing?

David Hirsch: That would be a totally different conversation. Cause I relate to that. I can relate to that a lot. Um, in fact, uh, the joke was, uh, I should have been an air traffic controller because to be a good air traffic controller, you can’t be emotional.

Right. You just need to be very focused on what’s going on and be objective about the situation. So the girls are super young, right? Premature they’re upon and a half each or so when they were born, I’m wondering, when was the diagnosis? What was your reaction upon learning about what their condition was?

Jon Ebersole: Well, the definitive diagnosis was given when they were about a year old. My wife being a bright woman knew earlier than that. That was probably, I tell people that was probably the. Worst week of my life, the hardest week to hear that diagnosed is to hear that definitiveness. We always have. You hope, you hope beyond hope.

You know, I hear this from many special needs moms and dads, you know, there’s something about that definitive diagnosis that it’s just kind of, Oh, that was a very, very, very

David Hirsch: tough week. So was there some advice you got early on? After the diagnosis that you can reflect on that really helped you Peggy put this in perspective.

Jon Ebersole: Well, we were blessed with an amazing pediatrician that helped us David. He came to our house for a meeting with the insurance company and the different people that were involved in our girls’ lives. A doctor came to our house,

David Hirsch: not doing a house call to check on the girls

Jon Ebersole: with, just for the meeting.

David Hirsch: That’s amazingness. It’s unheard of. I don’t even know

Jon Ebersole: what you would call it because I remember I still picture these. There was at least 10 or 12 people sitting around our living room, um, with the girls there. And it was a planning conference and I don’t even remember the content or anything, but it was.

Pretty powerful show of support and involvement in our lives and the girls’ lives.

David Hirsch: You know, you wonder if anything like that it’s taking place today? It seems unheard of.

Jon Ebersole: Well, we have Skype now

David Hirsch: as well, right? That a bridge, the gap technologically, but just the level of commitment that it sounded like, um, those that were engaged, uh, around you, not only from the medical community, but from your church community.

They really embraced you and you don’t know it at the time, but you can look back on it and say, but for that, where would we be?

Jon Ebersole: Exactly. Yeah. We feel very blessed to know that that God was very clear in providing for these two little girls that statistically, at that point in time, the survival rate was about 50%.

So

David Hirsch: 50 50. Yeah. So you’re thinking maybe one was one doesn’t.

Jon Ebersole: Exactly. Wow. And they both had a number of health. Scared.

David Hirsch: Okay. Like having to go back to the hospital type of deal?

Jon Ebersole: Um, no, just in the hospital. Okay. Amanda blew along. She had a pneumothorax. Jessica had a couple other

David Hirsch: achieves things.

Jon Ebersole: Yeah.

David Hirsch: Sounds very touch and go.

So what were some of the more important decisions looking back that you and Peggy made raising these three children, including the two with these pretty severe special needs.

Jon Ebersole: Well, I think one of the things we decided was that our lives were not going to revolve around disability and which is why we made the decision to try and have another kid.

And we’re very glad we did. I’m sure Ryan is glad that we had another kid. It changes the dynamics. We saw too many families that when the first kid that was born had special needs that all the focus went on that kid and what it did to that family. Being a family systems guy who looks at the system of the family and how they operate at.

And we were like, we don’t want to do that. I think the other decisions, some of the decisions we had made beforehand, which is we were both serious about serving God about following Jesus, about being good stewards with our money. And so there were things that were already done and decided that were foundational, that are foundational to life are foundational to having kids and parenting them.

Well, we are big on people. One of my wife’s gifts is hospitality and she not only is very hospitable. She’s a great cook. And so having people in the home, the other thing is that one of the things that a counselor. Said to us is don’t cut yourself off from your typical friends, the friends that you’ve had, they may not understand about everything about disability, but they understand you.

So keep them and develop new friends. Some people are so frustrated with the lack of understanding by parents that by their friends or parents or family that don’t get the disability, that they kind of cut themselves off from that. And just focus on the disability community in that that can become a little bit.

Narrow in focus, David. So that’s a good question. I hadn’t really thought about those, some of those things. Yeah. Yeah.

David Hirsch: Well, it sounds like the advice you got early on, on along the way from different sources has really played an instrumental role in helping you sort of maintain your focus and not be disability centric.

That’s what I heard you say, right? As it relates to. Family are gonna raise and maybe Ryan’s existence a few years after him coming onto the scene helped you balance out things. So it wasn’t all about disability.

Jon Ebersole: I think so.

David Hirsch: Yeah. And

Jon Ebersole: yeah, disability affects the whole family. There’s no, every kid in the family, the parents, grandparents, it affects everybody.

David Hirsch: Most things are not all good or all bad. Um, so that was one of the questions I was thinking about, which is what impact has Amanda and Jessica situation had on Ryan specifically, and then the rest of your family,

Jon Ebersole: right? Well, in your book, 21st century dads, David, you talk at the right from the get, go about the, the gift that you were given.

And I, I think that it’s important to note that. All five of us in my family understand that we would not be who we are today. We’re not for the disability. None of us like that. Amanda and Jessica have disability. And yet that’s the reality as chatting Eareckson Tada says sometimes that disability sandblasts our souls and jackhammers are my pride and fear and ships away, all that crud.

That is there. And, and I would not be who I am. Were it not for the disability that, you know, that’s in our lives? I think that I didn’t learn until later the effect that it is on grandparents, because grandparents have a double whammy, they get they’re concerned about their kids and their grandkids. And so that double wait on grandparents and there’s some writing that is, uh, that is about that.

Not by me. I other people, you know, fortunately we were both in families that were willing to, you know, accept us and love us and include the girls. And not all families have that, where there’s disability, where there’s just some awful stories. You probably have heard some of those. And so we were very blessed that our families did not.

David Hirsch: Just the fact that you had an intact family structure, right. Um, grandparents in the picture, you know, is a, an important factor. Right. And whether they were able to make the adjustment like you were talking about or not, um, they were there and there was a presence and, um, every situation is a little bit different and you can’t know at the time you can only.

Understand when you look backwards and put it all in perspective, right. You know, what the important relationships were. So, um, I’m thinking about the supporting organizations when you’re looking back that, uh, you and Peggy have relied on for the girls, uh, you’ve mentioned, uh, United cerebral palsy, uh, was a really important organization early on.

Jon Ebersole: Yes, they were. They were, they were huge support. Um, Paul and Peggy who ran that organization were great, great supporters. And we got things even like a, an overnight in a downtown hotel that UCP solicited, those donations and restaurant coupons. And so Peggy and I went, I think twice we went because of the fundraising that United cerebral palsy had done.

Just little things like that.

David Hirsch: So in addition to a United cerebral palsy, I remember you talking about the important role that Easter seals played early on when the girls were five. And then even to this day,

Jon Ebersole: absolutely Easter seals was amazing. David, from early on, they sent therapists, occupational therapists, physical therapist to the home, to work with the girls.

The girls first playmates were therapists. Which is because they were on oxygen at the time.

David Hirsch: So I think it might be important to point out because I had a chance to meet the girls last week at one of your events that, uh, Amanda is in a wheelchair. Correct. And Jessica is much more independent, right? So they have a similar diagnosis with CPE, but the mobility that they have is quite a bit different.

Jon Ebersole: Right. As you may know, David. The diagnosis of cerebral palsy is a wide diagnosis with a lot. It looks a lot of different ways. There are similarities from person to person, but never many people that are the same.

David Hirsch: It’s mostly a physical diagnosis. Isn’t it? As opposed to being, uh, intellectual, or is there an overlap?

Jon Ebersole: There is an overlap. I think the, I found, looked at the statistics recent, but I remember a long time ago I looked and I think it was about a third of the people who have CP. Also have some kind of cognitive issue,

David Hirsch: but not necessarily,

Jon Ebersole: not necessarily.

David Hirsch: And as one of the girls in a good, stronger cognitive ability than the other, or they’re about the same,

Jon Ebersole: Oh, they’re both pretty bright and very engaging.

Then you talk with them. They’re both very engaging. Amanda is a little bit more of a challenge. She has what we call that a CPE accent, um, and kind of all lighter breathy voice. Um, so people have to be a little more intentional to, to hear her. She’s she’s amazingly wise, beyond her years. And Jessica, Jessica probably met most of the people in the room that night.

David she’s she’s quite an engaging. Oh, they’re

David Hirsch: both very engaging. Right? Uh, there was no question about that. And I don’t remember the dog’s name. Amanda’s dog’s name.

Jon Ebersole: His name is Ren Ren.

David Hirsch: Like the bird. Yeah. So is he an emotional support dog or I didn’t really understand, you know, what his role was?

Jon Ebersole: Well, this is Amanda, second skill companion dog.

And the purpose that he serves is he can open the, we have an elevator in the house and he can open the. Rope pulls on the doors and he can open and close those to give a man a little more independence. He can pick up things. If she drops them, bring things to her, bring things to us and provides certainly companionship for her and out in public.

Probably the biggest thing that he does and canine companions for independence, who is the organization. We went, they train these dogs amazingly. He is a social bridge. People always want to pet the dog or they want to know what your name, what the name of the dog is and these things. And so

David Hirsch: it draws people to Amanda, right?

Jon Ebersole: Because most people avoid. We, we, as humans, we avoid what’s different. And so we avoid the wheelchair and, but if the dog’s there, then they come up. Can I pet your dog? What’s your dog’s name? And so it gives them an opportunity to, for her to talk and for them to see that she’s the same as them. No just uses a wheelchair.

David Hirsch: Right. That’s really important. So thanks for pointing that out because I was a little bit confused. We do have a dog. I can’t say that I’m a dog lover, you know, like I’ll go out of my way to, you know, engage when I see a dog someplace, but I see it crystal clear. Now the role that an animal, whether it’s a cat or a dog more typically, and that situation would play, it seems instrumental.

Jon Ebersole: It is.

David Hirsch: Any other organizations that have played an important role in the girl’s lives?

Jon Ebersole: Well, certainly in addition to the church, the community support services provided respite for us in our respite. Initially we would drop the girls off and they would wail just wailed when we dropped them off

David Hirsch: separation anxiety, I

Jon Ebersole: suppose they were pretty young too, but we needed a break.

And, and they had the expertise cause you couldn’t ask the 16 year old next door to come over and watch your two year old. You know, they were just to the high, special needs. I mean, we suctioned Jessica was on, on a feeding tube until she was up until she was three. They were on oxygen. Jessica needed to be suctioned.

I mean, you can’t have a teenage girl doing that. We had nursing care in the fall. So taking them to the community support service group, respite. And Peggy and I are big outing. David was, we would go grocery shopping.

David Hirsch: Oh my. But we didn’t

Jon Ebersole: have two kids in a stroller to, you know, to take along with them. So they were a huge organization helping.

And then we got provided in home respite from them, which was huge.

David Hirsch: Yeah. Well, looking back on it, it seems like it was a safety though, you know, taking some of the pressure off the situation.

Jon Ebersole: Right. A lot of families don’t have that.

David Hirsch: So, what are some of the things that you and Peggy have done to help the girls reach their full potential?

Jon Ebersole: I think probably the biggest thing that we did is that we were involved in their medical care and their education. We both went to education meetings and just a little side tip is if you have special needs and you’re going to doctor’s appointments and IEP staffings. Um, or any kind of meetings at school, feed them,

David Hirsch: like bring donuts or

Jon Ebersole: bring donuts, whatever, you know, because we never, you know, some people prefer, so we would take, you know, something, something sweet and pastry and you know, some fruit, cheese, crackers, whatever, but people love that.

And does it make a difference? It can’t not make a difference.

David Hirsch: Can’t

Jon Ebersole: hurt. Exactly. These are people that work hard. I, in all the years there, maybe there’s one person who I thought you went into the wrong profession. You are a mean person, but that’s about it. You know, some people had varying degrees of competence and care, obviously, but I think there was only about one person that I met.

David Hirsch: I had the heart for the work that was out

Jon Ebersole: there working hard. And so to bring them a little. Sweetness, literally, and figuratively is just a good thing. And so both of us being involved, it made a difference for dad to be at those staffings. Cause most of the people in the school setting are female. And so for dad to be there, just my presence there changed the dynamics, both as a man and also as the father peg and I would plan and we would be good cop, bad cop, but some of them were difficult staffings later on, we actually even had a friend go along who.

Took notes so that we could focus on the process. I think that probably more than anything else, not only was helpful to the meetings and the process. It also spoke to the girls that both of us cared, both of us were involved with that. And just the number of trips. I mean, peg has done my wife, Peggy has done the majority of the schlepping of the kids to doctor’s appointments for 26 years.

And while I’ve gone to some of those, she has done the vast majority of those. She’s a loving woman, a committed woman, a fun person, much more gracious than I am. And so just that investing in the girls’ lives and what they needed is huge. I think,

David Hirsch: well, it’s very powerful. Both the girls graduated from high school.

They did. And Jessica also went on to college.

Jon Ebersole: She did. She graduated from college as well. Amanda said college is not for me. Okay. Academics is, is, is pretty hard as Amanda would say, if she was here, David, she would say that I forget which class it was, but, uh, she, Amanda, I heard her say not terribly long ago that peg should have, uh, her mother should have gotten a degree, uh, another high school degree for all that she helped Amanda with.

David Hirsch: That’s fabulous. So what was, uh, Jessica’s degree from Trinidad? Her

Jon Ebersole: degree from Trinity international university was in communication with an emphasis in church ministries. And she’s looking for a job that in ages, those things

David Hirsch: she worked at all since she graduated,

Jon Ebersole: she has, she’s had several jobs. She’s had several internships related to social media and disability.

She’s a hard worker. Loyal, very engaging young lady. Are you talking with her?

David Hirsch: Oh yeah. Yeah. She’s a go getter. Right? Um, I’m confident that she’ll find the right opportunity. That would be a good fit. And I think so too, you know, something that she could do on a longer term basis, but when I’m reminded about having kids about the same age as yours, John isn’t.

They’re not thinking I’m going to work at the same place for like the rest of my career. Like we might’ve thought, or our parents might’ve thought thinking, Oh, I could do this for a year or two. And then I’m going to do something else, which is sort of liberating, I guess. Right. You don’t always have to think, well, I have to do this for

Jon Ebersole: a long time when they’re saying yes to something it’s for a year or two.

Yeah, that’s kind of the millennial mindset.

David Hirsch: Yeah, exactly.

so let’s switch gears a little bit and, uh, talk about, uh, what it is that you do with Johnny and friends. So, as I understand it, the organization has been around for 40 plus years. It’s a global Christian disability ministry. What’s the mission of Johnny and friends.

Jon Ebersole: The mission of Johnny friends, David is twofold.

One is to communicate the hope of Jesus Christ that God has for everybody. And the other part of that is to help churches to do that so that people don’t have to be alone that are dealing with disability in their lives. They can be part of a community. As, as we’ve talked about already, the community for Peggy Nye was key.

And so we need more churches, you know, the very place that people should be the most welcomed you would think would be the church. And oftentimes that’s not the case. And again, like I said before, there’s few churches that intend to do that. Most often it’s out of ignorance. And so Johnny friends. Comes alongside churches to engage them and to provide training, to give them vision that on things that they can do to include people with disabilities and their families in what they’re already doing, you know, they don’t need to start new programs, build new buildings.

They just, you know, if they have a, a moms program, will they, you know, they should make sure that they have the kids of the moms that have special needs and, you know, To include that in, in, in that or Sunday school or youth trip, we had a woman that came to us, two different women, actually, when there was going to be a youth retreat.

And they said we would like to learn Amanda’s care so that she can come on the youth retreat, you know, that’s, that’s taking something that was already happening, the youth retreat, and then making that, that modification, if you will, for how Amanda can be included. And the two women that did that two different years, it was a huge sacrifice.

And yet, if you would ask them, they would say that they received more by serving Amanda than they gave.

David Hirsch: Well, I think what I hear you saying is that, uh, the objective is to help churches be more intentional about the environment that they’re creating for people with special needs.

Very well said. So I’m going back.

What’s the short backstory on Johnny and friends. How did it start?

Jon Ebersole: Johnny Eareckson Tada broke her neck in a diving accident when she was 17, just on the threshold of getting ready to go to college. And the Chesapeake Bay took what she calls a careless dive, broke her neck, paralyzed from the neck down, not able to move her arms much or walk.

And she was helped through her two years of rehab. Back in the day. That’s what it was two years before she

David Hirsch: goes, this is like 50 years ago now, right?

Jon Ebersole: Yeah. She broke in 50 years ago. And so there was a long medical, science was very different then. So she was in, she was in rehab for two years and her church came around.

Her family, her young life group came and visited her and did goofy stuff with her. And. And then she started speaking and painting. Um, and after she had gotten to the point of, she was ready to give up, you know, and she would have committed suicide if she could have, but she couldn’t. She says she couldn’t use a razor blade or push pills down her throat.

She was, you know, depending on people to wipe her nose. And so God used this unlikely person, which. If you’re familiar with the Bible, God uses a lot of unlikely people for unbelief, unbelievable impact. And John Erickson. Todd is one of those. And so she started an organization. She wrote a book, got interviewed on TV and did a movie was started appearing in crusades with Billy Graham.

And so her name got out there. People started writing and the ministry started at her kitchen table. And some friends started answering these letters and she soon realized these people needed more. And so God gave her the vision for this organization that next year we’ll be celebrating our 40th anniversary to help people, to help churches, to help people to see that God’s love is for everyone that everybody is made.

In his image. That’s what Psalm one 39 says that we’re all made in his image. We’re all on his mind. And that’s really what we’re communicated because society wants to tell us differently that if you’re not perfect and enabled to perform, and we have such a culture of beauty and perfection and related things in the West and that’s, that is not.

The picture that the Bible four trays of, of life and relationship and God’s love. And so we’re, we’re bringing them on an alternative reality for people to, uh, look at. Of course we think it is the reality.

David Hirsch: I liked that AR reference the alternative reality. So I’m John and France has a number of different programs.

I’d like to talk about the retreats, because this seems to be the centerpiece of what Johnny and friends does. So, um, one other treats who’s involved or who benefits from them

Jon Ebersole: while that is an amazing question, David, I hope you can. Maybe this next summer come and experience one of the family retreats. I would love

David Hirsch: to,

Jon Ebersole: a lot of people say it’s hard to describe.

One of the common descriptions is that it is a little taste of heaven. Not because there’s going to be disability in heaven, but the taste of heaven is the love and the community based on everybody, belonging in God’s eyes, you know, everybody being made in the image of God and that the power of that is.

Crazy. Just amazing. So anybody who’s involved benefits, I’m kind of starting at the end and working my way backwards. Family retreats are five days of wild fun. Johnny likes to call it slam dunk, fun, fun, that fun things that people normally wouldn’t get to do, whether it’s a zip line and we have harnesses for people.

Who need the extra support to go down to zip line or even swimming or horseback riding. We have square dance, which is one of the most popular things we did that just because we had a Western night, about 18 years ago and we did all this do a square dance. So we did a square dance. People loved it so much.

David, 18 years later, we’re still doing the square dance because it is so all inclusive of, of people. All abilities. Right? And so to have that environment where people are having fun together, and the big piece that makes a difference is that we do the respite part. We have an adult night where the, uh, from 5:00 PM to 9:00 PM, which seems like an eternity to parents that don’t get a break.

Very often the volunteers take care of the, uh, folks with special needs. And the adults have a quiet dinner and, uh, some entertainment, boat cruise. So it’s, it’s an amazing time of respite. And one of the messages is you’re important because God says you’re important. And, but wait, there’s more. The fourth thing is the church is the answer.

So family retreat is marvelous. We want the church to be doing this 365 days a year. Not just. For a family to enjoy five days a year. We want them to have community all year round. That’s what our passion at Johnny and friends is. That’s what family retreats about and who it affects.

David Hirsch: Well, thank you for the comprehensive answer.

And it’s more clear to me now that the retreats are like a demonstration project for the church’s right. To get a taste of what is possible. And if I. Understand what you were saying. It’s not for one type of family with special needs, but any family, whether they have really young children, teenagers, young adults, or adults, they’re all welcome at a family retreat.

Right? How many people have a chance to go on the family retreat here in the Midwest or in the Chicago area on an annual basis?

Jon Ebersole: Johnny Fran Chicago, which is the, the office that I oversee. We have about 15 offices around the country and I oversee the Chicago and we do for family retreats and we serve about 150 families.

David Hirsch: I know that, um, that’s something that would have great appeal to a wider audience if they were more aware of it. And I’m hoping that just. Interviews like this help spread the message and peak people’s interest, whether they’re a family touched by disability directly, or somebody that just has a heart for this type of

Jon Ebersole: work.

Absolutely.

David Hirsch: So one of the other programs that I was really impressed by is the wheels for the world, wheelchairs of all types, ones that are relatively new and don’t need any work. And then ones that might’ve been used a lot are donated to Johnny and friends. And there are a number of service centers, which are based in prisons around the United States that are refurbishing these wheelchairs.

How does the program work? Give me a little bit better understanding of that.

Jon Ebersole: Well, you, you described very well at the beginning that wheelchairs are donated prisoners in prisons, restore them to like new condition. And then we take them with teams of occupational therapists, physical therapists, wheelchair, mechanics, and support folks.

Two majority world countries, majority

David Hirsch: world,

Jon Ebersole: majority, world developing.

David Hirsch: And

Jon Ebersole: then we work within country partners, usually churches in, um, finding people who are in need. And then we bring the two together and it’s a great time of encouragement. So many countries is the treatment of people with disabilities is even worse.

It is worse than here in the States. Where people are kept in back bedrooms. They’re spit upon. They’re seen as curses that the person is curved, that the family is cursed at the mother’s curse. And so we are bringing talk about an alternative reality. I’ve had the privilege of going to Peru nine times and leading teams down there over 2000 people receiving wheelchairs.

And it’s, it’s fantastic. You know, people are very gracious and grateful. In many countries they couldn’t afford, even if they could find them. They’re just, there’s a different level of chairs that are available in most countries. So

give

David Hirsch: me a sense for the scope of this program, whether it be locally or on a overall basis.

Jon Ebersole: Johnny and friends has hand fit, uh, over on 100,000 wheelchairs. And we’re looking to do our second 100,000 by the year 2020. So that’s a lot of wheelchairs that need to be collected and refurbished and then hand fit. And to someone you know, where we’re able to look in their eyes and say, God loves you, enjoy the wheelchair.

David Hirsch: What I love about the program, obviously the beneficiaries on the people in these. Various countries, but the fact that you’ve sort of built into the process, the opportunity to get prisoners, some work experience, something that they can develop a skill in and. That you’re touching their lives in a positive way, because many of them may not have been impacted by disability, or if they were that they would have been negative impacted by disability.

And when I think about this as is the positive impact that disability is having

Jon Ebersole: on people’s lives. Yes you’re so right, David, I had the privilege of going to a prison and met this guy in his, on his, uh, fingers where. Tattooed the letters, L O V E on one hand. And on his other hand were tattooed the letters, H a T E.

So he had love on one hand hate on the other end, he said, this is the first thing that I have ever done with these hands that has been positive for someone else.

David Hirsch: Wow.

Jon Ebersole: Is that crazy?

David Hirsch: That is insane. Very powerful. Very powerful. Well, thanks for sharing. Um, are there any other programs, um, Johnny and friends does that are distinct from the retreats and the wheels for the world.

Jon Ebersole: Well, as we’ve already talked about the, the engaging and equipping churches is really the foundational part of what we do with that. We have something else that I think is important. Um, I don’t know if our listeners would, would engage with it as well, but it’s important. We have, uh, internships for people.

It’s a training it’s cause for life. Cause disability really is a there’s, there’s a justice aspect to it that people are not getting what they deserve. And so there’s a justice aspect of it, which really, I think appeals to most of us, if we have any kind of empathy engaged at all can ourselves, but especially this, our current generation of young people do, uh, go to a family retreat or going to wheels for the world outreach, get some training, get some education.

And those are people that are going to be leaders in their jobs, in their communities and their churches. But they’re going to have that experience with disability and to make the disability. We want disability in the church to be as common as Sunday school or youth group. And if, if a church doesn’t have it, it would be like, You don’t have something you don’t have.

You don’t have a, you’re not intentionally, including people with disabilities. What’s up with you, you know,

David Hirsch: make that exception out there.

Jon Ebersole:  You got Sunday school for kids and you got youth group. You gotta be including people with disabilities and all those things.

David Hirsch: That’s fabulous. So I’m thinking about the topic of advice and I’m wondering what are the more important takeaways that come to mind when raising a child with disabilities?

Jon Ebersole: I think if I were to distill it down and my wife makes me bet better, David and I had, when I went running this morning, I’m thinking, all right, what are the, what are the takeaways? What are the takeaways here that I want to leave? Cause there’s so many words I came back and my wife said, so what are your main points?

And I said, Oh honey, I’m so glad you asked that. I think it distills down to three God wife. And time that for, for people that are already connected with God, if they get stuck someplace, then they probably need to adjust their view of God. That is probably too small of a view of God. And I could not do what I did.

And I, I fail miserably so many times and for so many years, and, and only by God’s grace, I. Still have an intact family. I’m grateful for that. But my connection with God is where I get what I did. One of the things you say in your book is that we can’t give what we haven’t received. And that is so true.

David, I love what you said like that in your, in your book, 21st century dads. So the other thing would be wife. If there’s women listening, then husband, but. You know, taking care of my wife and that relationship. And again, so many mistakes I wish I could do over, but I can’t. But, uh, love is patient love is kind, I’m not always the most patient.

In fact, that’s one of the things my kids said to me when I was preparing for this, I asked them for feedback about, so what are the, some things that I did well and what could have I done differently or not done? And the thing that they all said would be the number three thing. And that is time that I spent time with them and I made time for them.

And that was something that they, all I listened did things with them was intentional. And so I’m grateful that my kids remember that and recognize that. And probably the thing that they, they all agreed upon it. I knew before I asked them this, so what would I do differently? And in some way, shape or form, be more patient.

Be more loving, yell, less my one sets. So those, um, those are probably the things, God, wife time. And I, I like what you say in your book, David, that we need to work on our stuff. We need to be intentional about it. Time does not heal things. It doesn’t, you know, time doesn’t make me a better person intentionality and God’s grace.

Those do.

David Hirsch: Absolutely. Well, one of the things I heard you say, and I put this in perspective, is that, uh, one of your inheritances from your dad or a legacy of his, I should say is the time that he spent with you and you’ve done the same thing by spending their time with your kids. And that is a testimony to.

What we’re talking about the importance of a father’s involvement with his children and not just being physically, emotionally and spiritually present, but being there, you know, sort of 24 seven, you know, it’s not a part time job. It’s not something I can do some days I’ll take some days off it’s, you know, you’re always on.

And, uh, I think that’s wonderful. Thank you for sharing.

Jon Ebersole: Well, the Bible says one of the verses says that love covers a multitude of sins. And so for all the sins and the impatience and yelling that I did my love for my kids dominated that I am incredibly grateful for that.

David Hirsch: I love it. So, uh, why did you agree to be a mentor father as part of the special father’s network?

Jon Ebersole: David, I love what you’re doing and I think that. Although, I, I don’t know if I would have asked for a mentor, I needed one, I needed one. You know, we need people that have been a little further down the road to, to help us out. And we had a group of people that was the same age. They had the same age kids as us in their kids’ early years, but we didn’t have anybody that was further along.

And I think that that would be great. I see that happen at our family retreats where there’s informally, that kind of mentoring takes place. And I think to formalize it like you’re doing and have done is beautiful.

David Hirsch: Well, we’re glad to have you as part of this special father’s network as a mentor father.

And I’m hoping that with the strong connections that you have through Johnny and friends and the other work that you do in the churches, that maybe that’ll be a catalyst for engaging more men, that would be great. So let’s give a special shout out to our friends, uh, at Johnny and friends and Agoura Hills, Steve Bondi in particular for introducing us.

Jon Ebersole: Absolutely love Steve.

David Hirsch: Yep. Uh, or a friends of the mutual admiration society there. Um, is there anything else you’d like to say before we wrap up?

Jon Ebersole: Okay, David, that’s a great question. I think in addition to the four things that I said, God, wife, time and addressing the barriers. I would say keep perspective that keep the big picture.

We get so focused in sometimes as special needs dads on stuff. I think acknowledging, accepting my weakness. So for that would be the thing acknowledge and accept our weaknesses. The more we can do that, it gives, it helps to keep me humble and it gives God more room to work. And to give myself a break, you know, to give yourself a break because God accepts us as we are.

There’s no need for me to clean myself up in order to connect with God or get God’s help. Probably those three things.

David Hirsch: That’s great. So if somebody wants to get involved, uh, with the wheels of the world to get their church involved or somebody isn’t trusted internship, or just get information on Johnny and friends or contact you, how would they go about doing that?

Jon Ebersole: Well, certainly can go to the, to the website, joniandfriends.org, backslash Chicago. Or they can call our office in Oak Brook it’s area code six three zero five seven three (290) 063-0573.

David Hirsch: Fabulous. John, thank you for taking the time and many insights. As a reminder, John has just one of the dads who was created to be a mentor father as 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 do 21stcenturydads.org, John. Thanks again.

Jon Ebersole: Thank you, David.

Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network. 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. Go to 21stcenturydads.org.  That’s 21stcenturydads.org.

David Hirsch: And if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: If you enjoy this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.

The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.