155 – Jeff Johnson of Anderson, SC, Father of Two, Including A Son With Hydrocephalus & Encephalocele

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s network, dad to dad podcast, working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics, mission at horizontherapeutics.com.

Jeff Johnson: To see that there is a deliberate movement in his eyes. To make something happen, um, that computer screen. And I’ll tell you to be honest with you. I, I really was not sure that it was going to work and, and, um, shame on me for not having more faith in Daniel, but to sit there and watch him activate that computer and it not being a random act, but something that he was intentionally doing.

Uh, was just absolutely incredible. And of course, you know, the tears, again, the tears are going of joy and happiness and excitement.

Tom Couch: That’s our guest, Jeff Johnson, Jeff and his wife. Michelle are parents to two boys. One of whom Daniel has hydrocephalus and encephalocele and is unable to walk or talk.

We’ll hear the Johnson family story and about how a new computer gives the family new hope. That’s all on this special father’s network, dead to dad podcast, say hello to David Hirsch.

David Hirsch: And thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the study.

So father’s network. This

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

Jeff Johnson: And

David Hirsch: 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: and now let’s hear this conversation between David Hirsch and Jeff Johnson.

David Hirsch: I’m thrilled to be talking today with Jeff Johnson of Anderson, South Carolina.

Who’s the father of two and a meat cutter. Jeff, thank you for taking the time to do a podcast interview for the special father’s network.

Jeff Johnson: Thank you, David. It’s a pleasure to be with you.

David Hirsch: You and your wife, Michelle been married for 27 years. One of the proud parents of two sons, Michael twenty-six and brother Daniel, who is 22, who has hydrocephalus and, and SEFA low seal, if that’s how you pronounce it.

Jeff Johnson: Okay. Okay.

David Hirsch: Thanks for the clarification. Sure. Let’s start with some background. Where did. Tell me something about your family?

Jeff Johnson: Well, I grew up in a small town, Elgin, Illinois, which is, uh, just about 35 miles west of Chicago, family of three. I have two, uh, younger siblings. Mark is my youngest brother. And then Amy is my sister.

She’s the youngest of the three.

David Hirsch: Excellent. So out of curiosity, is your dad.

Jeff Johnson: He is actually, uh, both my parents are still alive. Same age born on the same day, both 82 years old. My father loves to remind my mother that he’s about six hours younger than she is. So kind of an interesting fact,

David Hirsch: I don’t know if that qualifies her as a Cougar.

It was a running joke in our marriage as well. My wife’s about seven or eight months older than I am. So every once in a while, like I refer to where as a Cougar. Just didn’t good fun though. Right. So, um, what does your dad do for a living?

Jeff Johnson: My father is retired now, but when he was an electronic engineer, very hardworking father and, uh, also very dedicated to his family, my mother and, and us, his kids.

So he was a great dad.

David Hirsch: And how would you describe your relationship with your

Jeff Johnson: dad? I think it’s great. You know, as I grew up, I knew that I wanted to raise a family and raise my children and do the things that my dad did with us because my father and mother both were involved in all of the sports that my, my brother and I were involved.

And my dad coached baseball teams. My mother was of course always in the bleachers and washing and screaming and yelling for us. But, uh, my father was very involved with, uh, all of the things that we did, uh, extracurricular and then was just a great father at home. So we’re very close and still to this day are very close and I’ve always said if I could be the father, just half the father that he was to me, I would definitely feel like I was a success.

Okay.

David Hirsch: So let’s talk about school and career a little bit. Uh, my recollection was you went to Larkin high school and Elgin, and then Elgin community college. And when you were in college, um, I think you mentioned that your primary or initial focus was on culinary, and I’m wondering, um, how did that transpire and whereas your career today,

Jeff Johnson: Well, I, uh, I enjoyed, I actually in high school, took a couple cooking classes baking specifically.

And so I enjoyed both baking and doing different types of cooking and thought that I would like to go ahead and, uh, start into a culinary arts program at the community college. And of course I wanted to be the best at what I did. So, you know, the goal was to be the chef of a, of a five-star restaurant.

And, um, uh, like I said earlier, you know, I wanted to raise a family very, uh, similar to the way my dad raised a family. And I found out very quickly, at least for myself, that to be the best at one thing, uh, was not going to allow me to be the best at the one thing that I wanted to be the best at. I enjoyed the time that I spent in that program, but kind of veered away from that.

But then in my, my career, Very early on. I went to work at a meat market and, uh, St Charles, Illinois, and a manage their seafood department. And that really got me hooked. I guess you could say I’ve been with public supermarkets for, uh, going on 36 years and I probably have been cutting meat or fish for probably about 40 years now.

So. I’m still involved in food and, and I love it to this day. So,

David Hirsch: so let’s switch and talk about special needs first on a personal level and then beyond. So there were two diagnoses, one that was made in vitro, which was the encephalocele. I’m wondering how did that diagnosis come about? And what is

Jeff Johnson: we had an ultrasound scheduled? The reason that we had that schedule was my first son, Michael, was born with a facial cleft, which is very unusual.

Uh, and that was something that we didn’t realize of course until he was born. And so, uh, after that happened, when Michelle got pregnant with Daniel, We just wanted to make sure that, um, if there was something unexpectedly coming that we may have a little bit better chance of finding that out. Well, they did the ultrasound and, uh, the young lady, the check doing the ultrasound, left the room suddenly and, uh, within, without saying anything to us, And, uh, came back, uh, with a doctor and they received a look at Michelle through the machine and, and then left the room again.

And, uh, at that point, of course, Michelle and I were a little concerned because, uh, they weren’t sharing or communicating anything with us. And, uh, long story short, they came back and we went into an off. And they explained to us that Daniel had been diagnosed with a neural tube defect and that was in Sephora seal.

And that’s where the skull is not formed completely. It can be at the top of the head, the back of the head or the front of the head. And so this is what happened with Daniel and his was an occipital encephalocele. So it was on the back of his head. And the area that was affected or, you know, the, the primary functioning areas that breathing and the swallowing, um, all of the things that of course are necessary for, for a child to live.

So the diagnosis was not good. And, uh, the expectations of him living were, were not good. All.

David Hirsch: It sounds like it was an overwhelming experience. You know, you already have a son who’s a few years older and uh, you’re going through this traumatic experience. And I’m wondering, what was your first reaction or how did you and Michelle deal with that?

Jeff Johnson: Well, uh, it was difficult. It was difficult. We, uh, I think the tears. You know, started to flow immediately. I know, uh, Michelle was, was very emotional immediately, uh, as we sat in the doctor’s office and we were probably overwhelmed and in shock and didn’t really know what to say or do at that point, they encouraged, you know, that we terminate the pregnancy.

You know, there wasn’t a pressure to do that. I think, I think as we found out over the years, you know, that’s something that the doctors, uh, they have to, uh, recommend, you know, all the options that are available. And I think with the diagnosis, that’s really what they were recommending that we do. But, uh, you know, as we left and we, you know, going back now, 22 years, you know, we got on the internet and.

All the, we could find on any search, um, encephalocele and that diagnosis were, you know, these grotesque pictures of dead babies and babies that had been born and had not been diagnosed. So their heads were, you know, in, in terrible shape and just a lot of, a lot of bad. That information. Um, nothing about support groups, nothing about success stories, you know, where children have survived.

And so that was really all that we saw was a lot of negative. And at the same time in our hearts, we’re thinking we need to have this baby. We believe that God has a purpose for every life. I know that was the overwhelming influence, um, on what our decision was, but to share that story with that I did with you once before our store manager at that time gave us three days to just kind of get our thoughts together and try to make a decision on what we were going to do.

Uh, as far as Daniel was concerned, We took those three days. And that third day we ended up at a horse reserve park up in Clemson, South Carolina, beautiful park on the lake. And, and, uh, we sat at a picnic table and really not a lot of conversation other than I think that husband and wife conversation where there’s really no words, but there was a whole lot being said, we finally kind of looked at each other and we said, you know, why are we doing this?

We don’t need three days. We don’t need to think about what we’re going to do, because we know that we’re going to have Daniel. We’re going to take care of him no matter what happens, whether it’s one day or one week or one year, we’re going to give them the best life that we can give him. And that’s what we decided to do.

David Hirsch: Yeah, well, it’s a beautiful story. Thank you for sharing. Um, it sounds like it was very emotional. I can hear it in your voice and it’s 22 years later and, uh, it’s very powerful and it’s a testimony to your faith and Michelle’s face for that matter. So I recall you mentioning that Daniel’s had a lot of procedures.

I don’t know how many, including five cranial expansions. And I’m wondering if you could expound on that.

Jeff Johnson: Sure. We really stopped counting surgical procedures after a hundred. And we, we probably are into probably well over 150 procedures, but the cranial expansion Daniel’s skull hardened and the fontanelle or, or the soft spot hardened very quickly.

And then, uh, there was some thickening and Daniel’s skull. Which caused pressure on Daniel’s brain, along with the fact that he had hydrocephalus. So he had fluid in the ventricles of his brain and then his skull was not allowing for his brain to grow at all. And so what the doctors did was this cranial expansion and they would make an incision from.

Ear to ear over the top of his head. And then they would remove about a third of the top of his skull. And they would basically rebuild the skull on the table, in the operating room. They would cut the piece of skull into strips and they would lay it out on the table. And then it was spread those strips out just a little bit each piece.

And then they. Put the strips back together with straps of titanium and they would screw them together. And then they would put this newly formed, larger skull bone back on Daniel’s head. And then they would go ahead and close everything back up again. And so they did that five times.

David Hirsch: Wow. It sounds quite involved.

And, uh, And it’s such a young age, right? He’s having these procedures done as he’s growing. It seems like a lot to take in the fact that you’ve had a hundred or approaching 150 procedures. Holy cow just seems like a rollercoaster of a ride that your family has been on. And Daniel in particular. So he’s 22 years old.

From what I remember you telling me, he’s non-verbal he has profound intellectual delays. He communicates mostly through his eyes and the use of his right hand and index finger. And I’m wondering, how is it that you communicate? How is it that he communicates with others for that matter?

Jeff Johnson: Well, David from, I guess from the time that he was a baby, Michelle and I.

I have always talked to Daniel as if he was a typical baby. And I think, you know, part of that influence was one of Daniel’s occupational therapists. Her name is Kathy styles. She started to see Daniel at three months old, but you know, she said, we have no idea what Daniel can do or what he can’t do. And so we’re not going to limit him.

And the way that we treat him and work with him. And so I think that maybe even so, even much more from that point, we talked to Daniel as if he could hear us as if he could understand us. And just in case he did, then we were, you know, we were ahead of the game as far as the way Daniel communicates, you know, I guess it’s hard to explain that he communicates with his eyes.

But Michelle and I can look at him and we can tell, you know, whether he feels good, whether he feels bad, whether he is alert and listening to us, or whether he is zoning out because of his, his diagnosis. He, uh, he can shut down when there’s too much going on. And I think Daniel, over the years, he did that.

And so we could read a lot through his eyes and of course he make some groaning noises and some grunting noises that, that kind of correspond with either feeling good or not feeling good.

David Hirsch: So I’m sort of curious now. There’s been much of an impact on Michael, your older son or the rest of your family, or what impact has Daniel situation had on Michael and the rest of your family?

Jeff Johnson: Well, Michael is my oldest and, uh, just got married. He has just finished his first year of PT school and Michelle and I believe, and, you know, Michael has alluded to the fact that one of the reasons that he.

Decided he wanted to be a physical therapist is because of his experiences with Daniel, Michael Ashley would go, um, he would go to the school with us, of course, to pick Daniel up, to take him and to pick him up. You, I guess you can call him the jungle gym because as soon as he went into those classes, the kids just mobbed him.

And, uh, it was just non-stop the whole time we were there. And Michael absolutely loved it. He loved the kids. He loved the interaction. And so I think at a very young age, uh, Michael’s heart was touched. And I think the result now is what you see is, is an incredible young man with, with empathy, for the parent and for the child.

Um, because he he’s experienced at all. He loves his little brother. Incredibly. We see it every day and I watched him. He just left two days ago.

And, um, can you say goodbye to Daniel? And then he leaned down it, he leaned down and kissed Daniel hung the hand and just rubbed his head and said, goodbye.

That’s the norm. When Michael was home, he spoke to Daniel every day. He touched Daniel every day. He loved him. Um, the annual every day. That’s the kind of special some that I have.

David Hirsch: Yeah. Well, it’s remarkable that these boys are so close and it’s a testimony to your parenting. And like you’d said, he’s been touched, his heart has been touched by his brother.

And, uh, you know, perhaps it’s turned into a calling, right. You know, he’s at the beginning of his career becoming a physical therapist and, you know, nobody knows you can’t connect the dots looking forward. You can only connect the dots looking backwards. So, uh, thank you for sharing. So I’m thinking about supporting organizations or organizations that either Daniel’s benefited by directly or organizations.

Your family has benefited from. And I know that you mentioned Kathy styles, you know, from a very young age, Daniel’s young age, you know, has been involved. And I’m wondering if there’s any other individuals or organizations for that matter that have played an important role over the last 20, 22 years.

Jeff Johnson: Yes. Uh, the first group that we had is a nonprofit, uh, it’s called family connection, and it’s a nonprofit that is really out there to help families to connect to services. The families don’t know about. There’s so much that happens, you know, when a baby is born and so many things going through a parent’s head, and it’s nice to have somebody that can sit down with you and say, Hey, um, there’s this service out there and that service out there, and they can help you with this and help you with that because you have so many questions in your mind, uh, that you, that you have no answers to this particular group, family connection.

Connect to services. And then also his emotional support, Sherri fuller call Michelle. Uh, not too long after Daniel was born. She was a support, a support parent at that time. So she offered to be a support parent to us. And, uh, after a period of time that Michelle really felt like we didn’t need. Uh, support parent that we were going to, I guess, try to try to go in on our own.

Michelle made that call to share a and that phone call turned into a 17 year career for my wife, Michelle, because Michelle, shortly after she met Sherry actually became an employee for family connection and did the same thing. She became a support parents. So that particular group was very instrumental in helping us just get focused on the right things for Daniel to find the right services for him and to do the best we could do for him.

They were great. And then I think Michelle, uh, she did a fantastic job. She was wonderful with her families and. Was very supportive and we became all involved as a family with these families. And so it was, it was really a neat thing, I think, for all of us. So that was at a younger age. And then, um, Ansley’s angels, also a nonprofit it’s a group that was started by rooster roster, Kim rooster, Rossiter.

He had a child who diagnosis, I think probably not anywhere near the same. As Daniel, but our kids are very similar and what they could do on what they couldn’t do. It was suggested to him years ago by a therapist, you know, Hey Kim, you run, you know, why don’t you take Ansley out with you when you run?

That was the beginning of a, of an incredible movement. And I had an incredible organization and, um, we have been blessed to. Uh, become involved with them. Uh, Kim helped us, uh, early on to get a chair for Daniel. And so we run, we are not runners, Michelle and I are not runners by any stretch of the imagination, but we have been become runners for Daniel.

And so Daniel has a racing wheelchair that, uh, we push him in and Daniel loves to be outside. He loves, uh, The stimulation, uh, that we feel a whim, um, a change in temp. Uh, and that’s one of those things. When we talked about noises that he makes or his communication, Michelle, and I find that if we’re not moving fast enough, he lets us know by making some not so sweet sounds.

We’re doing that. I want to say we’re probably in about our sixth year of running with them and we just have become an ambassador. For the upstate of South Carolina, we invite children or adults in our community to come out and ride in our chairs. And then we invite runners to come and push our kids and push our adults.

And, um, it’s an incredible way to include special people in our family. And. Things that we do that they can’t do with us, unless we give them a summer systems is very special to us. The children that ride in our chairs absolutely love it as his angels has been an incredible group to be involved with.

And, um, Daniel absolutely loves that. So.

David Hirsch: I’m at a rooster roster a couple, three years ago and was immediately taken. By his passion for the work that you’ve just described, which, uh, brings people that are able bodied and able to run and push those that might not otherwise be able to participate in these running events.

Five Ks, 10 Ks, half marathons, marathons in some cases, some triathlons. And I’ve only done that twice. Once in the Napa valley marathon, uh, with a 29 year old woman who has cerebral palsy. And then, uh, again in January, 2020. I had the opportunity to push a nine-year-old in Louisiana marathon, half marathon, actually.

And, um, I have one of those pink racing chairs now in my garage all fired up about making better use of that this year. And then I’m hoping in years ahead, God willing. So thanks for sharing. I also remember you mentioning a company that I’m not familiar with, and I think it was eye gaze and I’m wondering.

What do they do? And what connection do they have to the Johnson family?

Jeff Johnson: Okay. You’re talking to a computer illiterate person. So it’s going to be very basic, very basic. There is a, there are computers that have been designed and I can’t tell you when it started or who started it, but, um, One of the names is an eye gaze computer.

The idea is that the person using the computer is able to make that computer function by using their eyes and connecting to cameras that are looking back at the person. So Daniel over the last couple months has been, um, kind of going through a trial period with a computer like that, to see if that might be something that he can use to communicate to us right now.

Uh, Daniel is just kind of playing games with it. There are certain games that are downloaded on the computer, but it’s incredible to see after going on 23 years now. To see that there is deliberate movement in his eyes to make something happen. Um, um, that computer screen. And I’ll tell you to be honest with you.

I, I really was not sure that it was gonna work and, and, um, shame on me for not having more faith in, in Daniel. To sit there and watch him activate that computer. Uh, and, uh, not being a random act, but something that he was intentionally doing, uh, was just absolutely incredible. And of course, you know, the tears, again, the tears are going of joy and happiness and excitement for Daniel and therapists that have been working in with Daniel for 20 years, the Kathy styles who says, I knew he could do it.

And the other therapists. Just we’re so excited calling late at night. Can I stop at the house and check on him and see how he’s doing? So it’s amazing. And like I said, I don’t understand all of it, but I know that it’s something that, that may help Daniel. And if nothing else, if it allows him to play electronic games that he enjoys doing, then it’s a win-win.

David Hirsch: Well, thanks for sharing. Um, it sounds like it’s something that’s more recent. So maybe what we can do is a follow up a year, a couple, three years down the road and take a look back and see what, if any impact this has had. And, uh, you know, it sounds like it has a lot of potential. Yeah. So I’m thinking about advice now, and I’m wondering what advice beyond what you’ve already described, that you might be able to share.

With another dad who has a child or in some cases, children with, oh boy,

Jeff Johnson: we got, have we got a couple more hours to talk, David? I think the biggest thing and the biggest takeaway is, and it’s very easy to say, and it’s very hard to do, but look for the things that your child can do and what your child’s potential is because our kids.

So we call them special for a reason. And our kids are warriors and our kids have hearts that are so big that we can’t even fathom what’s going on. They want to do so much just like typical kids. They want to be successful and they want to do special things and they want to make mom and dad happy. And so if we limit that, we’re eliminating for the child, the joy.

Oh, something that that child could do and were eliminated for the parent, the joy of seeing what their child can do.

David Hirsch: That’s fabulous. Thank you. Um, so if I can paraphrase what you’ve said, uh, emphasize what your child can do as opposed to what they can do, and don’t put any limits on them because you don’t know.

Only God knows. What’s possible. And if you had to err, err on the side of encouraging them to try things, you know, even if it doesn’t seem possible, visibly possible that something could be accomplished. And uh, if you don’t try, you’ll never know. I think that’s one of the ideas that comes to mind. So I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the special father’s network?

Jeff Johnson: Um, well I tried this many years ago. Like I said, my wife was involved with family connection. I guess one of the things that jumped out at me among other things was the divorce rate of parents who had children with special needs. I experienced, you know, going to doctors visits, anything that involved Daniel and the medical community, for whatever reason they seem to.

Leave dad’s out, exclude them, turn their chair, the other direction from dad, you know, specifically to mom, for whatever reason, we’re just kind of left out. And I don’t know that it’s intentional or not, but it makes it very difficult. First of all, just I think a dad’s makeup, a man’s makeup is different than a woman’s.

So we deal with things a little bit. It’s hard to ask for help. We don’t stop ask for directions. So why would we ask to have someone help us raise our child? So I saw that, you know, firsthand with, with Michelle, with her families, listening to her stories of what was going on in a home. So I tried to start a father’s network.

With the help of, of a couple of ladies with family connection. And like I was before, you know, I offered food. Uh, I offered dancing girls. I had everything that would bring Daz out to a meeting and I could not get a dad to come to a meeting. And so, uh, this is my second chance and, uh, I was so excited when you called me.

And again, of course, thankful to rooster for, for recommending, but this is my second chance to get involved. And so I really, really would, would love to make an impact. Here’s one dad, if I can help one dad out in any way, then. That would, would really, really make me happy. So that’s where I’m at on.

David Hirsch: Well, we’re thrilled to have you, and I’m hoping that you’ll be able to impact not just one dad, but perhaps many dads ones that you’ll know.

And in some cases, maybe just listening to this podcast, that’ll be a source of inspiration to somebody that you or I will never know. And that’s, I think the beauty of what we’re doing. So I’m wondering if there’s anything else you’d like to say before we wrap up?

Jeff Johnson: Um, can I share a scripture with you?

Absolutely. I want to read a couple verses from Psalms 1 39. It goes, you made all the delicate, inner parts of my body and then me together in my mother’s womb. Thank you for making me so wonderfully complex. Your workmanship is marvelous. And how well I know it, you wash me as I was being formed and under seclusion, as I was woven together in the dark of the womb, you saw me before I was born.

Every day of my life was recorded in your book. Every moment was laid out before a single day has passed. You know, um, all of our kids are special, David, but. God doesn’t make mistakes. He didn’t make a mistake with Daniel. And that scripture tells us that he knew Daniel before time and Daniel was a value to him.

And if he’s of value of the God, then he’s of value to Michelle and.

David Hirsch: That’s beautiful. Thank you for caring. Let’s give a special shout out to Ruth, to roster, a mutual friend and founder of Ainsley’s angels. Ainsley’s dad for that matter, as well as podcast ad number 29. If somebody wants to learn more about family connections about Ainsley’s angels or contact you, what’s the best way to do that.

Jeff Johnson: Oh, um, let me give you a. An email address it’s actually, um, Michelle’s and mine, um, that way, um, it’ll reach both of us. It’s a M I C one, D a n2@bellsouth.net. And that’s mic for Michael and Dan for D. I

David Hirsch: love it. We’ll be sure to include that in the show notes as well. Okay, Jeff, thank you for taking the time in many insights as reminder, Jeff has just one of the dads.

Who’s part of the special father’s network. The dad to dad mentoring program for fathers, raising children with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation on your own, please go to 21st century dads.org. Thank you for listening to the latest episode of the special fathers network.

Get a dad podcast. I hope you enjoy the conversation as much as I. As you probably know, the 21st century dad’s foundation is a 5 0 1 C3 not-for-profit organization, which means we need your help. Keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support, Jeff.

Thanks again.

Jeff Johnson: Thank you very much, David. I really enjoyed it. Thank you. And

Tom Couch: thank you for listening to the dad to dad podcast presented by the special fathers network. 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. Go to 21st century dads.org.

David Hirsch: And if you’re a dad looking for help or we’d like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad also, please be sure to register for the special father’s network biweekly zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David. At 21st century dads.org.

Tom Couch: Dad to dad podcast was produced by couch audio for the special father’s net. Thanks again to horizon therapeutics who believe that science and compassion must work together to transform lives.

That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics at horizontherapeutics.com.