038 – Attorney Josh Jacobs on raising a child with Cerebral Palsy and a rare seizure disorder.

Transcript:

Dad to Dad 38 – Attorney Josh Jacobs on raising a child with Cerebral Palsy and a rare seizure disorder.

Josh Jacobs: People want to help people. All they need to do is be asked. And so it might be hard to ask for that help at times. But if you go up and ask someone, Hey, I need a little help. Can you help me four to five times that person’s going to say yes.

Tom Couch: That’s Josh Jacobs, a Michigan-based attorney and a father of two girls, Marnie and Allie who have cerebral palsy and a rare seizure disorder.

Josh is our guest on this dad to dad podcast. And here’s our host, a man who spent decades advocating for fathers David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad, podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.

Tom Couch: This Special Fathers Network is a dad to dad mentoring program.

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 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: So let’s listen now to David Hirsch’s conversation with special father Josh, Jacob,

David Hirsch: I’m thrilled to be talking today with my friend, Joshua Jacobs of prime Minton Hills, Michigan, a father of two and a real estate attorney, Josh. Thanks for taking the time to do a podcast interview for the Special Fathers Network.

Josh Jacobs: No problem. Looking forward to catching up

David Hirsch: you and your wife. Jodie, you’ve been married for 16 years and they’re proud parents of two girls, Marnie age 13 and Ellie age 11, who has cerebral palsy and a rare seizure disorder.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Josh Jacobs: Uh, sure. Grew up in West Bloomfield, Michigan, which is a suburb of Detroit, pretty typical family. Mom, dad, still married to this day. They’re now in their early seventies and I’m the older sister. Uh, it’s two years older than me.

West Bloomfield, you know, has pretty suburban lifestyle, a great area to grow up in being a Midwesterner. You know, you have plenty of house, plenty of, uh, outdoor play activities spent many days with friends and. Family and cousins around just out and about didn’t have too many worries. Good school systems, all that kind of stuff.

Pretty traditional

David Hirsch: upbringing then.

Josh Jacobs: Correct. Excellent.

David Hirsch: So how would you describe your relationship with your dad?

Josh Jacobs: It was great. I mean, my dad’s a small business owner. He took over from his father. My grandfather, he actually started working for the business right out of high school, did a little bit of college, but he didn’t graduate college, but he, because of that was there, you know, every dinner, uh, coached my literally baseball made all my soccer games, you know, made a real effort to be involved and, you know, always acknowledged that.

I always acknowledge that, that, you know, I didn’t see all my friends, dads doing that. So it was nice, you know, it was comforting to have your dad there and he would tell me like, if you need anything, I’m there for you. Just let me know very open about that.

David Hirsch: Excellent. So is there any advice that you received or maybe an important lesson or two that you learned from your dad?

Josh Jacobs: Yeah, I mean, there’s a lot of advice. He was pretty conservative, a little more than me per se, not necessarily in a lifestyle, but just in his thoughts. But the advice he always gave me was just be nice to people work hard, you know, school, school, school, you know, study or weed, the great things. You don’t know what, but just do the right thing, go to school, continue education.

And on top of that, you know, he would always preach kind of family first that your family is always with you. And even if you get mad at them, it doesn’t matter. You just got to let it go and continue on and their family. So we got gotta. You know, let it pass and, and just be there for each other.

David Hirsch: Yeah.

Well, there’s something to be said for having a good work ethic. And then, um, I know that one of our family’s values is education as well. And part of it is that my grandfather, uh, immigrated to the United States in September, 1930, nine of brightest, Poland was being invaded and as German Jews, you know, they were just happy to get out of there, but so they had to start all over and, uh, he was sort of bitter about the experience.

And he would always say education is one of those things that nobody can take away from you. So I think that’s where our family value about the importance of education came in. So let’s talk about your grandpas. What role did they play in your life?

Josh Jacobs: Um, you know, again, so my dad’s father, you know, the one who I guess started the family business, he worked a lot.

We always did Friday night dinners together as a family. He was there and I knew he loved me and he would always, you know, he always makes sure you knew we were loved, but. It didn’t get very deep. He was a pretty, still a character, not a ton of emotion. Other than you just knew. He loved you. My mom’s father actually comes from, it was my grandmother’s second marriage.

I’m not sure what happened to the relationship. In the first marriage, other than it was bad. And my grandmother got out of it. My mother was young. She was like six years old. And to this day still won’t really talk about it and doesn’t want to talk about it. So the second grandfather came into her life.

She always spoke of him as her father, and therefore I always knew him as my grandfather, uh, and treated him as such. And he was much more involved. As a grandparent took me to sporting events, took me, golfing, just always took me out as a young kid. You know, we had a in comics, we both like sports. We both like to golf.

We both liked to go out, but he made sure to take me to those events and do those things. One-on-one, you know, without my father, just, he wanted that one on one time with me. So there was definitely a special bond with him because of that.

David Hirsch: That’s fabulous. I think I remember you telling me that he’d take you to pistons lions games and you had a special experience at a Redwings

Josh Jacobs: game.

Correct? Yep. He got me on the ice to play a little, uh, it was called squirrel back then, but yeah, he had, uh, he had a friend who got me the ticket and next thing I knew at, I think I was like 11 years old and on center ice skating or in my shoes, but trying to play squirrels, pretty incredible experience.

David Hirsch: That’s fabulous. So was there anybody else that served as a father figure or you were growing up or maybe as a young adult for that matter?

Josh Jacobs: Father figure? No, I mean, you know, I think I was just fortunate that my parents had a lot of good friends and those friends, you know, they were like family too. And because of that, I looked up to all my friends, fathers who are my parents’ best friends and they, you know, we had a tight group and they wouldn’t hesitate to give me some advice or be around.

I mean, when my dad coached, literally he did it with the same close friend of his, for life. I dunno, eight years. So it was, you know, always the two of them out on the field with us. And then there was another guy that would always coach her soccer team. And one of my mom’s best friends, her husband taught me to water ski.

So there was always that family dynamic of men being around and helping and not being that, being afraid to get involved in the hangout.

David Hirsch: That’s fabulous. So you and Jody have been married for 16 years. I’m sort of curious, how did you meet.

Josh Jacobs: So Detroit is kind of a small, suburban type community. If you come from certain era areas and I’ll try to keep it short, but my mom and her dad actually went to elementary school together in Detroit.

My mom was a few years older, but they didn’t really hang out fast forward. I don’t know, 40 years later or whatever it is. 50 years later. We go on a trip to Cancun and some of my mom’s best for my parents’ best friends were also, you know, her dad’s, I guess they had friends and everyone kind of knew each other.

So there was like 10 families that go to Cancun to each other with each other. So when we were on that trip, Jody and I met, we weren’t there to be with each other, but all these families kind of went to the same resort and that thing. The second way. We really got to know each other was through a camp camp Tamarack pretty big here in Michigan.

Again, we really bonded as friends. First, we always had crushes on each other at a young age. You know, I think I was a senior or a freshman in college and she was a year younger than me. We were friends first and crushes, but we always had a boyfriend. She had always had a boyfriend, or I always had a girlfriend and it kind of went back and forth.

But we formed this friendship first until we started dating. Looking back. I think that really laid the groundwork for our life, some of the challenges, but certainly, um, I think that was a good step for sure. That’s fabulous.

David Hirsch: So you’ve known each other for a long time,

Josh Jacobs: so we’ve known each other for a long time.

David Hirsch: So you went to Michigan state and then you went to law school at John Marshall. So as you were thinking about undergrad law school, what were you thinking about from a career standpoint at that

Josh Jacobs: point? So if I’m going to be perfectly honest, I knew I always liked business. I knew I liked real estate and I knew I wanted to make money.

And those were kind of all I was thinking about. And I didn’t know what I was going to do or how I was going to get there. I also just knew I liked working with people, so I just wanted to be active. I always said I don’t want to be a traditional corporate lawyer. I don’t want to sit behind a desk. I don’t want to just be stuck.

I want to be out. Doing deals. And I didn’t know, I didn’t even know what that meant because my only business exposure in the world was just seeing my dad run a small business, you know, coming out of college. I actually moved out to LA for a year, was a waiter and saw all my friends going to grad school and said, okay, I’m going to go to business school.

I’m gonna go to law school and said, you know what, if I go to law school, I can also always practice business. So that’s what I’m going to do. So that’s what I did and ended up in Chicago at John Marshall. You know, looking back again. I think that was the right move.

David Hirsch: That’s fabulous. So let’s just wind the clock back a little bit.

You didn’t go out to LA to be a waiter. What were you doing out there?

Josh Jacobs: Uh, finding myself to true. So given my somewhat of a free spirit, I had a friend in Michigan. I still didn’t know what I wanted to do. After graduating college, it felt a little lost. And I had a friend that had fallen on some rough times.

He had a suicide attempt. He was unhappy in a bad spot. So I literally said, Hey man, let’s move out to LA and figure it out in a week later, we packed up the car and drove out there. So I didn’t go out there to be a waiter. I’m really, didn’t go out there with a plan either, but I knew I had to make money and I knew waiting tables in Beverly Hills was probably the fastest, fastest way to make some money.

So we were able to get jobs doing that, that paid very well. And that’s what we did. I had a dream of maybe getting into acting and I tried a few, you know, like everyone else, I, I went for some, uh, extra type roles and check out acting school and all that kind of stuff. But LA is a tough place. Humbles you quickly, especially if you come from the Midwest like myself and it was a wake up call to missing my family.

Looking back on it. You know, and feeling very alone in wanting to ultimately get back to the Midwest, to be closer to family and friends.

David Hirsch: Yeah. Sometimes you have to be away from something or be separated from it until you can put it in perspective too. So good life lesson to learn at a pretty early age.

Josh Jacobs: Certainly.

David Hirsch: So let’s talk about the special needs community initially on a personal level and then beyond. Before Ellie’s diagnosis, did you or Jody have any connections to the special needs community?

Josh Jacobs: Fairly limited, except that when I worked at this camp that I mentioned prior second year as a counselor there, they started a program where you are like a helper and they said, we need some volunteers.

We got this special needs program who wants to help. And I don’t know why, but I raised my hand. I was like, I’ll help. What do I do? And they’re like, you’re going to be a shadow for a kid for the summer. I said, great. And so I did that then for three summers after that, and I just felt like these kids deserve to be included.

And if I could be a liaison for that, then why not? I was, you know, I had a good group of friends. I was well liked. So I sort of saw it as a, you know, what I should stick up for these guys and like, help them be inclusive. It wasn’t. Camp back then. Wasn’t like it is today. These were some of the first programs where they are really doing inclusive summer living at these camps for these kids.

So I’m excited that I can be a part of that. It was kind of groundbreaking at the time. In fact, one of our kids for summer, we did a Western trip as staff with kids, 20 kids in a boss for out West, and because of myself and two other staff or three other staff working with this kid over the summer, he was able to go on that trip.

And we still talk about it today. What a great trip it was, you know, and not only for those other kids, but for him too. So outside of that though, I didn’t have much involvement, you know, other than just seeing kids in school or whatnot.

David Hirsch: So, uh, what is Ellie’s diagnosis and what was your first reaction upon learning about it?

Josh Jacobs: So. It’s a little complicated. Her diagnosis at the time was infantiles spasm syndrome, which is also called the West syndrome, um, which is a rare seizure disorder that forms in kids between four and six months old. We didn’t know what was going on when I got the diagnosis I was in barest for, I dunno, why just that things weren’t going well.

I was scared I was miserable. Um, I was depressed. I was all of those for probably a good year. Well, when, you know, she was four months old when we found this happened out still hard for me today to think about how I was back then, because I, you know, I just just hits you hard. And it was, uh, it was pretty terrible.

She was a normal, happy baby up until four months old. And then when the seizures hit her. It, uh, it was like her world kind of stopped and because of that, my world stopped so tough, tough life experience. Um, speaking of my dad, I remember him coming over one of the first times we got home from some doctor appointment and I can still I’m in my kitchen and I just falling in tears.

And I just remember him, uh, holding me and hugging me, just telling me that he’d be there for us. And it didn’t make it better, but it made it more comforting and easy to deal with. And we were lucky, you know, we had a lot of family, my wife’s parents, both were there for us. My mom, you know, my sister, like family, definitely surrounded us friends, surrounded us with love, but you go to bed at night and it’s just you and your wife, you know, it’s still a scary feeling.

David Hirsch: Yeah. I can only imagine. Um, so was it difficult to get seizure control or what were the next steps?

Josh Jacobs: Yeah. So you try a baseline medicine. The first one we tried didn’t work. So then we stepped it up a notch and we tried another one. It didn’t really work. And so by that time, you’re going back and forth a month had passed and she’s still having 20 to 30 spasms, you know, a day, if not in an hour and you’re freaking out.

And so you’ll try anything. And so what doctor had recommended that a drug they use in all these other countries. But it wasn’t FDA approved here. Uh, it’s made in Rockford, Illinois, but not it wasn’t FDA approved. We can get into a whole reasons or conversation about why, but anyways, I would fortunately again, good fortune.

I’m not that far from Windsor. So I got a script and drove the Windsor. When the winds are paid a pharmacy, paid a doctor, get a bunch of medicine, come across the border. They asked me, what are you doing in here? I tell them buying drugs to, so my baby will stop seizing and the guards would literally be like, if you’re being that honest, have a great day or the TSA guys.

Wow. And I’d come back in. The States gave her the meds and it works immediately. Thank God. You know, the only negative it was, it kind of stopped the seizures, but it kind of comatosed her and stopped her growth for a good while we are on it, you know, call it a year, nine months, whatever. But. You know, we had a choice to make and the seizures were destroying her brain every day.

So, you know, we had to stop those.

David Hirsch: Well, it sounds like there was a trade off, but there was at least some immediate relief from the seizures that you experienced.

Josh Jacobs: Yeah, definitely. It got better from that point. That was definitely like a well, but, you know, just trying to figure out, navigate the system, navigate insurance, all that stuff.

It was, it’s a tough, a tight rope. And back then we didn’t have social media. So there was no real. Chat rooms to go into, you know, this is in 2000, it’s crazy to think technology how fast it comes, but she was born in 2007. So this is going on in 2007, you know, Facebook and all this stuff hasn’t really exploded today.

You can punch this in and they have groups, you know, that are infantile spasm, parent groups on Facebook. So you can just always get a little more help, which is great, but I don’t even think I had an iPhone back then. Technology wasn’t quite there yet. It was just on the cost to help. Yeah,

David Hirsch: pretty remarkable.

So was there any advice that you got early on that was instrumental beyond, you know, discovering that this drug that was ironically manufactured here in the States, outside the Chicago area that you had to go to Canada to get? Was there any advice that you got that was really helpful?

Josh Jacobs: Um, yeah, I mean, so we have couple of really good friends who their sibling will.

One of our really, really close friends, her sibling was, you know, had something called the rat syndrome and her parents came over. Cause it was her sibling, but it was their child. And they spent a lot of time with us. And again, it was just more comforting to listen to them, talk about how their support in our community.

We just got to ask for it. We’ll be there. People are there to help you, but. It’s not just going to end up on your door. It’s kind of like looking for a job. You can’t just sit in your room and expect things to happen. You still have to get out there and find it. But also that don’t focus on the neck negatives, focus on the positives and remind yourself that it’s going to get better.

And, and someone at some point introduced me and I still read it from time to time. There was a poem called welcome to Holland by Emily Perl, Kingsley. I highly recommend anyone going through, uh, early on situation. They, they Google this poem and they read it. When you’re going to have a baby. It’s like, you’re planning a vacation to Italy.

You’re all excited. You get a whole bunch of guidebooks. You learn a few phrases so you can get around and then comes the time to pack your bags and had theor port only when you land the stewardesses. Welcome to Holland. You look at one another in disbelief and Shaq sane, Holland. What are you talking about?

I signed up for Italy, but they explained that there’s been a change of plan that you’ve landed in Holland and there you must stay, but I don’t know anything about Holland. You say I don’t want to stay. But stay you, do you go out and buy some new guidebooks. You learn some new phrases and you meet people.

You never knew existed. The important thing is that you’re not in a bad place, filled with despair. You’re simply in a different place than you had planned it. Slower paced than Italy, less flashy than Italy. But after you’ve been there a little while, and you’ve had a chance to catch your breath, you begin to discover that Holland has windmills.

Holland has tulips. Holon has Rembrandts, but everyone else, you know, is busy coming and going from Italy, they’re all bragging about what a great time there had there. And for the rest of your life, you’ll say yes. That is what I had planned. The pain of that will never go away. You have to accept that pain because the loss of that dream, the loss of that plan is a very, very significant loss.

But if you spend the rest of your life mourning, the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.

Reading that poem was just super helpful for us. And it, it brought a lot of clarity to what, what we sort of had to do.

David Hirsch: So the name of the poem is welcome to Holland,

Josh Jacobs: correct.

David Hirsch: And the

Josh Jacobs: author is Emily Kingsley.

David Hirsch: So what are some of the biggest challenges that you’ve encountered with Allie situation?

Josh Jacobs: Um, you know, it’s all us, I mean, at the end of the day, The challenges are all in my head and Jody’s head and it’s let me take that one step back. The biggest challenges I have another child, you know, it takes a lot of effort to raise a special one and a, and you don’t want your other child to feel that ever.

And she was some of our best medicine from day one, you know, having a two year old, when I mentioned all those things, that I was all those miserable depression and all that stuff going on. The only thing that made me happy was my two year old, because she didn’t know any better. And she would just. Jump around the room and giggle, and we could have a sense of, you know, just normalcy with her, which was amazing, but that’s also a challenge, right?

Because there’s times that affects her. When she sees to this day at 13, she goes to a friend’s house and has a sleepover and has a great time. There’s, you know, four siblings of her friend. And then she comes home and cries and I’ll say, why are you crying? And she’s like, cause I just see how happy they are in a typical relationship.

And all the siblings can do and engage and do stuff. And I can’t do that with Allie. And so it’s challenging that we have to remind her and look for what we can do with Allie and focus on the positive, same thing I have to do with myself. But if you, you know, the question is what’s the most challenging thing it’s, it’s making sure that she’s okay.

And then I give her enough time. It’s the same as if you would have two typical siblings, but it’s, it’s just a little more push at times. You have to give to that other one to make them feel that everything’s okay. And normal. I mean, there’s, there’s just more pressure on her. She feels it. She can sense it at times.

David Hirsch: I can only imagine what have been some of the more important decisions that you and Jody have made in light of the situation with Marnie or beyond for that matter.

Josh Jacobs: Yeah. So I think just taking time out. I’m in life to enjoy what we have. I’m not sure if this is what you mean, but you know, just taking time for ourselves, taking time out, getting away, still doing vacations, enjoying each other.

Even if we have to modify things slightly, you know, it’s okay. Everyone’s got their problems, uh, talking them out and, and just getting out there and having fun and laughing and just enjoying life and not. What was me and, you know, seeking happiness, you know, we were still very fortunate in so many ways.

And, and what, and what’s important is to acknowledge that and to understand how fortunate we are and how much worse it could have been. And even though we have our issues, how much worse they could have been, and to really just focus on the positive, I guess, Um, you know, if you’re talking about instrumentally, like what do we do?

You know, setting up your special needs trust, and trying to put money away and plan for the future. You know, we, we try to juggle all that stuff as well, but I think more important than that is just like, I would tell a typical person it’s just living life enjoying life’s short. And even with our challenges, just trying to enjoy it.

David Hirsch: Good words of wisdom, no matter what your situation is, whether you have a special needs child or otherwise. Like you said, we all have our issues. There’s going to be different challenges in a relationship or with work or family and looking at the bright side of things as opposed to the dark side.

Josh Jacobs: Definitely. And it’s hard, you know? Yeah. I mean, it’s hard for anyone is what I’m trying to say. It’s hard, it’s hard for, you know, people everyone’s got their issues, you know, it could be. You know, my dad was a juvenile diabetic, so it was his mom. And when he was raised in the fifties, like he used to have all these died, but didn’t have the medicine they have today.

Good advice. My dad gave me, he taught me that he, that was one of the first things. When we had the diagnosis, he mentioned to me, he talked about his diabetes as a young kid and how. He felt like his world was ending when he was like 13 and all of his bodies were be able to do stuff and his sugar was low and he’d pass out and he’d get made fun of, and in the time, in the moment it was a big deal to him.

And so he explained that to me when I was going through this veil and it really made sense, you know, it was a little eye opening conversation to have with them. And it made me realize, you know, what. You know, if a kid gets the mumps today, but they’re typical, otherwise that’s a serious problem. And that becomes an emergency for that family.

So how do they deal with that? So you gotta stay positive. Excellent.

David Hirsch: So a what type of supporting organizations have you relied on for Ellie’s situation?

Josh Jacobs: Yeah. So here in Michigan, we’re super lucky and fortunate to have the friendship circle, which is an organization that supports kids and families of special needs, and they help anyone they’re nondenominational there, any race, any religion, if you have any type of special need, they are there for programming.

They’re there for support for the siblings. They are there for the parents. It’s a wonderful organization and it is spread, I think, to almost every state in the country and also international. But the original one was based out of here out of the Detroit, Michigan suburbs, close to where we live. It was started in someone’s basement of a house, and it’s grown to a full facility, uh, where they have basketball and hockey leagues.

They do overnight camps. They teach Sunday school to the kids. They come to your home with volunteers, for friends at home. They do field trips. I mean, it’s just unbelievable what they have put together. And it’s all about inclusivity for these kids. One of the things that I’ve learned from them, and I’m going to try to quote them as best as I can, but, uh, they truly believe that when we focus on the material and the physical, we see how we are all different.

However, if you look within each person, you see a pure soul. And on the level of each person’s soul, they say that everyone is equal and that we are all the same. And if you think about it, you know, it’s so true. We do all of the soul and looking at our soul, you know, regardless of how the outwardness and the, you know, someone’s verbal or nonverbal, or if they have cerebral palsy or whatever it is they can or can’t do.

Yeah. You might see that kid’s different. He’s weird. He’s can’t dance like me, but on the. He get inside that kid or that adult for that matter with special needs and down to their soul. And we’re all the same. We all have the same desires. We all have the same wishes and, and, you know, he all in the same ability at that point.

And so I think that’s really important.

David Hirsch: Agreed. So what are some of the programs that Al has been able to take advantage of through friendship circle?

Josh Jacobs: So she has done Sunday school. She does friends at home. So a couple of volunteers for years would come to our house and play with her. You know, with Allie, she doesn’t have a ton of friends that can come over and play with her.

And you know, today, these kids, she’s 11 we’ll come over. And we had a college student that used to volunteer with her, call us up two weeks ago and say she wants a girl’s day. She misses alley. She came home from Michigan state university, took Allie out for a full day, from like 10 to five. Took her to the mall, took her to build a bear.

Took her swimming and it, you know, as much as someone might say, alley’s happy and you know, she has fun. And, you know, she looks at her older sister going and doing things with friends and sometimes she cries. She gets sad. She knows that, you know, That she would like to do these things, but she needs the extra support.

So the fact that that program started that, you know, that initiative for now, these college kids can continue is amazing. She goes to overnight camp. They do every summer for three nights, they load up a boss. They go up North to Michigan and they do campfires and roasting marshmallows and just complete, overnight experience.

She does in the summer a day camp with him, or they go to water parks in downtown Detroit museums and any type of facility. You know, you name it, they take the kids to do all with volunteers again. So they’re mixing typical kids with special needs kids and they sort of all blend in together that way. So the volunteers shadow them, but they become friends.

And so it’s not like they’re just watching these kids for her. Those would be the main programs that she does. Excellent.

David Hirsch: And I think you mentioned in a previous conversation, there’s a program called you matter,

Josh Jacobs: what’s that about? Yeah. So you matter is a program started by friendship circle. Fortunately, it hasn’t affected my immediate family, but it’s program where they go into high schools and they talk to a lot of kids and they shattered.

They’re trying to share their stigmas surrounding mountain mental health and located. The challenges of suicide and they talk openly about it. And they’re there for high school kids, primarily as it’s become somewhat of a national epidemic suicide to make sure that every kid knows that they matter and hence the name you matter.

And so they formed these support groups, peer to peer, with facilitators, for them to work it out, essentially. That’s

David Hirsch: fabulous. So I remember telling me about some biking program. Do you know anything about that?

Josh Jacobs: Yeah. So friendships are go every year. Does a blanket fan program. Essentially they spend a few days that if you’re a kid with ever their challenges wants to ride a bike, they will teach them to ride a bike.

They bring in this support, the staff, they get them on the bike. Some bikes are modified. So they’re more like choice or goals. Some bikes are just regular bikes, but they. Spend the time and energy to get those kids out, to ride a bike. And again, if you look out, I don’t know why the exact, why they do it, but if you look at, you know, all kids ride bikes, so they figure, you know, why should just cause if your kid has a challenge, why should they not have a bike and not be able to ride a bike with other kids in the neighborhoods?

So that’s just a program they put together and it’s really taken off and it’s really cool.

David Hirsch: Excellent. So I’m curious to know what role has spirituality played in yours and Jody’s lives.

Josh Jacobs: Um, you know, I’d like to think I’ve always been a spiritual person, but, uh, I definitely would say that it’s intense and fide after having kids.

And then after having a kid with special needs even more. And I think that’s based on some of what I learned from the people at special needs, like talking about the soul and these other things. There’s such an innocence. You know, a lot of these kids have no mean bones in their body and there’s such a simplicity to the way they look at life, but they’re happy.

And so, you know, I it’s helped me just take that in. You know, I deal in real estate and I come into work and I work at a development company, which is great, great family, run business, very happy when I’m at great people, but sometimes. You got to teach yourself out of the zone when you’re dealing with things like what amyloid deal with and work and realize there’s a bigger purpose here.

And so Jody and I will talk about it. We try to enforce that with both girls, you know, it’s a continuing, I don’t have it perfected and it’s a continuing learning process to be no, almost at peace with myself, with our situation with Allie and at life and focused on what’s important for her. Is she happy?

Is she safe? You know, and what we can control

David Hirsch: excellent. Or the girls mitzvah or not.

Josh Jacobs: So Marnie, your bar mitzvahs are at 13. Marnie just had her bat mitzvah. It’s September 1st of this year. And is that

David Hirsch: in the cards for Allie or not?

Josh Jacobs: It’s definitely in the cards for Allie. I’m not sure how we’ll look, you know, with Marnie.

It was very typical. She did great chops. She’s an amazing student. She excels. I could go on and on about my first child. I mean, she’s just. Amazing. And I’d never be right to brag about her. She does great. That being said, her bat mitzvah was typical. She wanted a fun party dancing party. She did great on the BMO.

She had her bat mitzvah, you know, we had a DJ, she had 60 friends, we had a hundred adults, you know, I don’t know if that fits what Allie will want. And I don’t know if she’ll be able to verbalize what she wants. Exactly. But we’re going to make some very calculated, you know, planning. To make sure we give her what she wants.

And is she going to be able to read the tour exactly from the Bema? I don’t know, but we’ll work with our temple and friendship circle and we’ll get it right for her. And then we’ll give her whatever celebration that hopefully with her, we can figure out that works for her. And it just because it’s not a party and maybe what the DJ was 60 kids.

It doesn’t need, it’s not right. It’s just, we want to do what’s right for her. Maybe it will be a trip somewhere. I mean, I don’t know the answer today, but. In short, the answer is yes, it’s in the cards for her and she’s going to get something.

David Hirsch: That’s excellent. Well, you’ve got a little time to think about it too.

Josh Jacobs: A little, but it does creep up fast. Time goes.

David Hirsch: You don’t have to tell me about that with five kids. The baby is 21. She’s in college. She’s going to be graduating in like six months. I’m like, Holy cow. Where did the time go?

Josh Jacobs: Oh man.

David Hirsch: I was good. So I’m thinking about advice. What are some more important takeaways that come to mind when raising a child differences?

Josh Jacobs: You know, I think some advice is just to always as panicked as you might kid or stressed or, you know, my biggest thing that I have to do for myself, I have to give myself advice all the time. And some of the advice is kinda what I said a minute ago is focused on what I can control today. Focus on if my kids are safe.

And if they’re happy today, yes, I have to plan. But don’t get stressed out about what I can control, what might come a year from now five years from now, or what freaks me out the most 20 years from now when she’s an adult and I’m in my sixties and you know, is she going to be independent and will she be working?

Where is she going to live? You know, that’s kind of out of my control instead of focusing on what I can control today and give her or your child the best advocacy and support that you can. Advocacy is tough speaking up sometimes to teachers or doctors and acting for second opinions is a tough thing to do.

But if you feel in your gut that you need to ask for that a second opinion or go to a second doctor, or you know, is crazy as you might think you are for and do it because your kids can’t, they need it. Especially your special ones. They need you to do it for them on their behalf and never feel. Um, embarrassed or shame or, or number, question yourself for it.

That’s that’s, you know, that’s what you should be doing anyways, but even more so for the special ones.

David Hirsch: It’s good advice because if you’re not advocating for your kids, who would be right, you know them better than anybody else.

Josh Jacobs: Correct.

David Hirsch: And it’s not a science so much as it is a little bit of an art to raise a child and to try to figure out, you know, how to get them to reach their full potential.

Josh Jacobs: Absolutely. And you know, the other advice I would say is get to know your community, get to know your neighbors, get to know your people. We really try, you know, alleys in this phase the last two years where anytime we meet someone, she wants to hug them and she wants us to hug them and mean one time my wife answered the door.

And the ups guy was delivering an Amazon package and opens the door, invites me in and goes, mommy, hug mommy hug. And she’s like, Allie, I am not hugging the delivery, man. Just owning it, making it silly, making it. Okay. Um, you know, anywhere I go, no. And I learned this from another friend. I have a good group of friends.

He’s a little older than me. He has a son with autism and anywhere he would go with his son, whose name is Eli. He wouldn’t wait for someone to say. Hi little boy. What’s her name? Because Eli’s autistic and he’s got issues talking. So instead he would just cut it off and he’d be like UI. This is Mark’s.

They had a Mark and then Eli can just go. Hi. And it sort of takes the edge off. Right. And so I sort of keyed in on that and I do that now, when I’m out in the public with Haley Haley, this is, you know, Bob, the waiter, or this is our ups man say, how do the ups man? And then a lot of times the ups will guy will just say, hi, I’m Dave and it takes out any awkwardness, but then it also brings everyone kind of on the same level and you just get to know people.

So, you know, it’s not. Easy to do. And it took me some time to learn that trick, I guess, but I’m looking for those tricks, relying on others, seeking advice of other people in your situation. Those are all important. You know, as a guy we want to, I remember man, I was, so I did not want to tell anyone what Allie had, because I felt like it would label her forever.

When she got the labels into the house spasm syndrome. I was so afraid to tell my buddies, like she had spasms. What does that mean? You know, and I remember growing up as a kid, like the kid was a spasm was bad thing. So in my head, I, I didn’t even tell anyone the first, like couple of weeks, what was going on with her and you know, it.

It hurt on the inside. And so, you know, some other advice would be whatever the label is, whatever the situation is, try to own it. Don’t be afraid to put it out there because the more labels, the more people know about it, you know, the more accepting I really believe people will be of your situation and people want to help people.

All they need to do is be asked. And so it might be hard to ask for that help at times. But if you go up and ask someone, Hey, I need a little help. Can you help me? Four to five times that person’s going to say, yes, you know, it’s very rare. You’re going to get it now. And so, especially when it comes down to kids, you know, just to ask for it.

Yeah. Well

David Hirsch: that probably doesn’t come naturally to most dads. It’s probably moms that find it easier to ask for help. Remember we as a gender, won’t pull over and ask for directions on we’re lost in the car.

Josh Jacobs: So

David Hirsch: we’re starting with a deficit or a liability. So I think training yourself or disciplining yourself to maybe do something that isn’t instinctual is really important.

Josh Jacobs: I agree. And I learned a lot of that from my wife. Who’s a social worker, so I, you know, I give her a lot of credit. Communication’s key if we didn’t have our strong bond between each other. I mean, I don’t know where we’d be. I mean, that’s the other thing is we’ve always communicated with each other when one of us has feeling well, we tell each other that I’m having a rough day.

This is bothering me with Allie, or even with your typical kid, right. Because it’s going to happen with your regular kid too, but communicating that, so the other one can pick you up or no, they have to be a little bit more on their, a game has been so helpful. Not only for our kids, but our marriage.

David Hirsch: Yeah.

Great advice. So, um, is there anything you can share with dads or parents for that matter about helping a child with disabilities reach their full potential?

Josh Jacobs: Uh, that’s a good question. Other than, you know, I just think you gotta keep pushing them. Try not to enable them. It’s so hard, even for me to this day, like she puts on her shoes and, you know, I just want to tie them, or if there’s Velcro, I just want to like strap them.

Or when she takes her shoes off, I just want to do it. Even the daily living needs, just giving her a spoon instead of a four. Cause she’ll eat faster, trying to resist those things. You know, those are the longterm things you can think of to help better your kid. You know, what can I do today? That’s going to help them.

And even though it might take a little longer. Or cause a little short term pain in that regard. It’s okay. If we get to our goal, which is independence, inclusiveness, and growth.

David Hirsch: Yeah. Great advice about not enabling kids, whether they’re typical or otherwise. One of the experiences I had was in battle Creek, Michigan with the WK Kellogg foundation, whose mission is helping people help themselves.

Which is a really important thing in the world of philanthropy, which is instead of doing something for people right here, let me make it easy for you, enabling them to do something for themselves. It’s sort of like they give somebody a fish versus teaching them how to fish syndrome.

Josh Jacobs: Sure.

David Hirsch: And it’s easy to talk about, but like you were saying on a day to day basis when you’re sort of in a hurry and you just want to get from point a to point B, you know, you need to pause.

Right. And just say, okay, you know, it’s gonna take a little bit longer for her to get dressed or to get in the car or whatever on her own, versus just picking her up and putting her in type of deal. And my heart reaches out to you and all young parents for that matter, because it does take a lot of discipline to be able to do that with some consistency and the benefits are going to be longterm, right.

Because they’re able to do things on their own.

Josh Jacobs: Certainly. And the, I think what goes along with that too, is just to know that you’re not going to get everything again. And a lot of these I’ve learned they cross boundaries between your special needs kid and your typical kid, but it comes because of the special needs kid, at least in my case, it does.

And just understand that you’re not going to get a perfect, you’re going to be wrong sometimes. And that’s okay. You know, and accepting that and not feeling the need to be perfect. And trust me, I say all this, like I. Live it every day. I still go through my down moments and still forget about these things.

So I just, you know, as that’s part of my growth, do I understand I have to keep reminding me of these things. That’s why I go back and I’ll read the trip to how one poem. I will read it at least once every six months just cause it therapeutical you spiritually. It helps me. So it’s, it’s a constant just like raising kids.

And you mentioned earlier, it’s, it’s constant, you know, until they’re adults and off on their own and gone from the house. I mean, It’s a constant work in progress. Absolutely.

David Hirsch: Well, let’s give speed check then. Um, a friendship circle, a call up

Josh Jacobs: for introducing us. Yes, definitely. I mean, greatest place, in my opinion, in the world, that organization.

So

David Hirsch: why did you agree to be a mentor father as part of the special fathers network?

Josh Jacobs: Um, you know, I think it just comes down to, I know how hard it was for me and I didn’t have any, I had my dad’s and I had my friends. Who, none of them had special needs kids giving me advice for just patting me on back and telling me they’d be there.

But, you know, I’ve had some really good mentors through the friendship circles. Some older gentlemen who have been through the ropes and I’ve been in because of the friendship circle, been able to be in one, on one situations with them. They’ve provided this to do a lot of parents programming. And I know what it’s done for me personally, for Allie, for Marnie and for my wife and for our, all of us in our relationship.

And so if I can give a little bit into that back to someone else who maybe doesn’t have a friendship circle in their town or community, you know, it’s the least I can do. It’s, you know, it’s all about paying it forward.

David Hirsch: Well, thank you for being involved and thank you for looking to help other dads, perhaps that are closer to the beginning of their journey.

You know, raising a child with a similar, special need to the Ellie house. So is there anything else you’d like to say before we wrap up?

Josh Jacobs: No, I’d like to thank you. I think what you’re doing is great. Um, I think this organization you’ve put together just to reach out and expand and let dads know that we can share in some of the joys and cry over some of the Paynesville together.

And that’s okay. I think it’s great. So, um, thank you for reaching out to me, reaching out to see Shackman and friendship circle and. You know, I really appreciate it. I think it’s a great thing you’re doing. No,

David Hirsch: you’re welcome. Um, so if somebody wants to get information on friendship circle or contact you, how would they go about doing that?

Josh?

Josh Jacobs: So friendship circle is just friendshipcircle.org. That’s where you would start. You know, I would contact them primarily how the website and. They will have an input process that it’s not fairly long and they’ll figure out sort of what you’re looking for. The last few, some questions, you know, is it for you?

You’re a kid, what’s the programming, you know, how can they help? You know, from there it’s just a small role of contact information is can trade place and move quickly. Excellent.

David Hirsch: Josh, thank you for taking the time and many insights as reminder, Josh is just one of the dads. Who’s agreed 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, your own, please go to 21stcenturydads.org.

 Thanks again.

Josh Jacobs: Thank you.

Tom Couch: And thank you for listening to the dad to dad. Podcast music for this episode was provided by. Purple Planet music purpleplanet.com. The poem. Welcome to Holland by Emily. Kingsley was read to us by Carolina Gwen. The dad to dad podcast is produced by Couch Audio for this Special Father’s 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 mentors. Father’s 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 you’re a 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 again, to find out more about the Special Father’s Network, go to 21stcenturydads.org, 21stcenturydads.org.