252 – Bob West of Colorado Springs, CO Founder of Need Project, Father of Three Including A Son With Cerebral Palsy

Transcript:

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

Bob West: It is gonna be okay. You may not feel okay today. You’re not gonna feel okay every day, but you can do this. It’s in you. You have the ability to do this. Don’t fall for the lie that people are better off without you. That’s not a true statement. Your family needs their dad more than you will ever know.

Tom Couch: That’s our guest this week, Bob West, whose son Kyle has cerebral palsy and is studying for a PhD on disability in the ancient world at the University of Pennsylvania. Bob, the dad, formed the Need Project, helping families with special needs link up with groups who can really help. Bob tells quite a story and we’ll hear it this week on the Special Fathers Network Dad to Dad Podcast. Say hello now to our host, 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.

Please support the 21st Century Dads Foundation by contributing to Dads Honor Ride 2023, which is a 3,100-mile seven-day bicycle ride taking place from June 17th to the 24th, starting in Oceanside, California and ending in Annapolis, Maryland. I’m one of the four riders and would really appreciate your support. Please make a tax-deductible contribution by going to 21stCenturyDads.org.

Tom Couch: Please mark your calendar and plan to attend the annual Special Fathers Network Dad’s virtual conference taking place Saturday May 20th, starting at 8:00 AM Central time. We have some extraordinary presenters and have built in plenty of time for breakout discussions and networking sessions with like-minded dads. Go to 21stCenturyDads.org and register today. So now let’s hear this entertaining conversation between Bob West and David Hirsch.

David Hirsch: I am thrilled to be talking today with Bob West of Colorado Springs, Colorado, a father of three, a retired IT professional, and founder and president of Need Project, a not-for-profit serving families impacted by special healthcare needs. Bob, thank you for taking the time to do an interview for the Special Fathers Network.

Bob West: Thanks for having us.

David Hirsch: You and your wife, Sue, have been married for 32 years, and the proud parents of three: Monica 25, Jonathan 27, and Kyle 30 who has cerebral palsy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Bob West: I was actually born in Wichita Falls, Texas, but we didn’t live there long. My dad was a Air Force guy. He was a 20-year, I always call it the Air Force grunt, but he actually got his parents to sign off at 17. So he went into the Air Force. Not long after that we moved back to Southern California where he was from. We ended up back there in the San Bernardino area, but he was from the LA area. He had actually met my mom, who was originally from Guatemala. Got married and had three kids, me being the youngest.

David Hirsch: My recollection was you had an older brother and sister.

Bob West: Yep. My older brother, Bill, unfortunately recently passed away, and my sister Peggy.

David Hirsch: Yeah. I was very saddened to learn that your brother died more recently of COVID, just this past year. So my heart reaches out to you and your family as a result of that.

Bob West: Yeah.

David Hirsch: I’m wondering, how would you characterize or describe your relationship with your dad?

Bob West: As a kid you always, it’s always an interesting thing. You feel like he’s never gonna understand you or that you’re always on the wrong end of the stick. At some point I realized my parents did the best they could with what they had, where they came from. I always laughed that it didn’t put me on the most sensitive end of the spectrum. I’d say I’m a pretty tough kind of character, but it certainly prepared me for life and a lot of the things that have happened along the way.

I feel like he gave me an amazing work ethic. This was a guy who took care of our family by getting up early on the weekends and working evenings on second jobs and doing everything to take care of our cars and our house. And my kids laugh at me because there was never somebody hired to come fix something in our house. It was… We tore it apart. Me running tools for my dad to go get things while he figured out how to repair it. I don’t know if many of these things, I don’t know if he had ever done it before, but he had the knack for just tearing things apart.

And I remember he got a car for $75 because a guy couldn’t put the carburetor… A guy had taken apart the carburetor and couldn’t put it back together again. And I remember sitting there with my dad with that carburetor going across like three tables, just all the parts out, and somehow he put that thing all back together and got that car back together and it ran beautifully for our family for years.

So the guy was amazing and I’m grateful that some of that has rubbed off on me. I’ve been able to fix my cars and work on my home. I see that as an amazing gift that he’s given me that I haven’t had to… I have had to hire people cuz I’m not as good as him, but I have definitely been able to do a lot more and take care of a lot of things for my family that I never knew I’d be able to.

David Hirsch: Yeah. Thanks for sharing. It sounds like he was very disciplined. I guess that probably goes along with his career military credentials and it sounds like he was very handy.

Bob West: Yeah.

David Hirsch: I don’t know if I would refer to him as MacGyver, but somebody who was gonna figure things out. And I think that is a good role model in a lot of different respects of our lives.

So I’m curious if there’s any other individuals that played a father figure or had an influence on you as you were growing up.

Bob West: My mother’s side of the family was very tight, so we spent a lot of our time with uncles and aunts and family. So I would say all of my family had an influence because we almost ran as a pack. There were, I think, five cousins who all were the same age as I was. Particularly I had an older cousin that influenced me. He came to live with our family cuz he had gotten a job and actually I got a job working with him and my brother. They both worked at the same company. Instead of going to college, I went directly into a pre-press company and got an apprenticeship and so started doing those types of things in the printing business. And so they were very influential. My uncle was also involved and he had gotten them the job. So it was a very family-oriented group.

We were always together. We did Sunday dinners. It wasn’t just one, there was a pack and we all connected together. And so all of those men were influential, especially my one Uncle George, who was the crazy guy who always got us involved in stunts. So he was always the one building a jump or a ramp for us to go off of, or building a huge slide out of a treehouse or helping my dad build a diving board off of the roof of our house into our old pool at an old house. So he was the instigator, troublemaker I’d say. So he had some influence on how many bones I’ve broken over the years, let’s just call it that.

David Hirsch: My wife would say that it’s all fun and games until somebody gets hurt.

Bob West: We actually say it’s all fun and games and you WILL get hurt.

David Hirsch: [chuckles] Very similar. You mentioned that you went into an apprenticeship in printing, and then I’m wondering where did your career take you from there?

Bob West: Yeah I was fortunate to get into that. I was just 18. Got an apprenticeship, moved up rather quickly. I was in a company that was small but was growing, so I was really able to move up quickly in that. I did a three-year apprenticeship. And then as I was working in this industry, what was really happening was this was about the time that computers started coming into the printing industry. Early Macintosh computers were coming in and being used to try and produce some of the film. And at that point what we are finding is it was early on and so the stuff the computers was doing was really awful. It just didn’t meet the requirements to be able to do the work on the printing press. So we started having to figure out how we were gonna use this stuff. I would stand behind the computer guy and go do this, do that, and I got tired of doing that. So I started going to the local community college and taking computer classes at night and pretty much I just ended up saying, move, get out of the way, and ended up working on it myself, which got me into computers. And then the industry started really changing over to computers, and then companies started finding out about me, this kid who knew how to do things. And so I started getting jobs with other companies who wanted to go this direction.

And so then I had to start learning networking, like how to plug ’em all in together, how to make it all work. We were having our third child and my wife was working nights as a nurse. I was working days, and we just decided, there’s no way we can keep doing this. It was just killing my wife and we were gonna find somewhere else.

And so her family was actually from Colorado, so we decided we were gonna start looking in Colorado. So I found a job at a printing company here that again, needed somebody to be able to do this kind of work. We moved out here, but right after we moved out here, a local nonprofit called “Focus on the Family” was asking if there were people who’d wanted to do some side work, helping them set up computers and things.

And I said, you know what? We were just new to this area, had a house. They sell you a new house without the yard and without fencing, and you gotta pay for all these things. So I said, I’ll take the extra work. And so I started working there at nights, just helping them set up computers a couple nights a week.

And then the gentleman who I was working with decided to leave and they asked me to come on. I switched out of the printing industry at that point to full-time IT work. I’ve been working in the IT industry… That was 25, 27 years ago. So transitioned over to IT, continued to get certifications and do all the things to be able to know what I needed to know and do those things. And then was able to get into management positions and run service desks and I’ve done contract for government work. I’ve tried my own IT business. So I’ve done just about a little bit of everything in the IT space since then.

David Hirsch: Yeah. Thanks for sharing. So I’m curious to know how did you and Sue meet?

Bob West: I was a young man and I had become a Christian in my early twenties, so I decided to go to a bible study, a group of folks from a church. They were all kind of young adults, and I met my wife there. So she had just returned from getting her nursing degree and we started dating and ended up marrying a year and a half later.

David Hirsch: And the rest is history.

Bob West: Yeah. 32 years.

David Hirsch: That’s fabulous. Let’s switch gears and talk about special needs first on a personal level and then beyond.

Bob West: I always laugh that you have a plan for your life in your mind, even if it’s not an official plan. You have these things in your mind that you think are gonna happen. You’re gonna get married, you’re gonna have kids, they’re gonna go to college, they’re gonna do all these things that you didn’t do or things you aspire to. And then I’ve always laughed that God laughs very hard at that because it’s never our plan.

David Hirsch: Yeah. I can relate. So I’m curious to know what is Kyle’s diagnosis and how did it come about?

Bob West: Yeah he does have cerebral palsy. Basically it means that there was damage in his brain that affects his motor skills. It can be more. It can affect speech, it can affect a lot of different areas, but it’s basically… When they say cerebral palsy, it really means that there was brain damage that’s affecting a part of the brain that affects different parts. Specifically with Kyle, it’s really physical. It affects definitely his legs a lot, really his whole body to different degrees.

He’s now 30, so it’s been a long time. But to give you kind of the story of his birth… We’re married a couple years, having our first child, absolutely clueless as to what the future holds. And my wife one night just says, something’s not right. So we call the doctor’s office. It turns out she’s having contractions and they’re very close together, so they tell us to go up to the emergency room. She worked at Stanford Hospital at that time, we were in the Bay Area, so we run up to Stanford Hospital.

I always laugh because they said, oh yeah, you’re having contractions. We’re gonna give you this shot to slow down the contractions, to stop contractions. And then they said, oh, we’re gonna check you. And they check her and they say, oh my goodness, you’re so dilated. You’re having this baby now. Couldn’t you have done that in reverse order so that you didn’t do the…? Anyway, [laughing] so they rush her into a delivery room. This is at seven months. So Kyle’s at… he’s early. He comes like two in the morning and they wheel him off. And so we’re not sure what’s exactly going on, which is, for a parent, you’re just standing there wide-eyed. What the heck is going on?

So after a couple hours, we were able to go see him. He was four pounds, four ounces. He was in the NICU with wires and hoses coming out of him every which way. You always laugh. All these machines that are beeping and all this crazy stuff, you feel about as useless and as helpless as possibly can be.

So that began our journey really with Kyle. He was in the NICU for a month. For all indications from the doctors, things went very well with him, very well. He was breathing on his own without oxygen early. All of the signs were that things were going well, and after about a month, we were able to take him home.

David Hirsch: Your experience with Kyle reminds me of my oldest daughter, Amanda, who was seven weeks premature, three pounds, nine ounces, two weeks in the NICU. But they had to put surfactant into her lungs because they were concerned that her lungs weren’t completely developed. And looking back on it I would tell people it looked like a science fair project, right? With all these wires and monitors and things.

Bob West: Yeah.

David Hirsch: And then, I don’t know if this was your experience, Bob, but the day that they decide that it’s okay to go home, they just take everything off and they’re like, here you go.

Bob West: Yeah.

David Hirsch: It’s like, well, if she needed all that stuff a minute ago, why doesn’t she still need that stuff? [laughing] So it was pretty shocking. But thank you for sharing. But if you can roll the clock back to that point in time… You bring Kyle home, he is pretty tiny still, right? Because of his premature birth. What type of fears did you have or did that not really take place until you got the diagnosis a little later?

Bob West: Yeah the only thing they sent him home with, because I believe he had maybe one little heart episode on one of those monitors, they sent us home with really just a heart monitor. This thing that [laughing] the thing would go off, and this wasn’t a little alarm, like “beep, beep, beep.” This thing would scream at you. And what you’d usually find out is that he had turned over and the strap that went around that held it, had moved off away from his heart so it couldn’t read. So it would scream at you, you panic and then you move. But they sent us home with quite literally nothing. It was, oh we’ll put this heart monitor on for six months and then if he has any events, well, there could be some other things. But then at the end we’ll do this study where they had it like read out on a, like a printer that read out, like the heart thing at the end. And they said, Nope, he’s good. And they hauled it all off. That was it!

David Hirsch: Yeah. Crazy stuff. When was the diagnosis actually made then?

Bob West: Because he was in the NICU at Stanford I always think it was probably some graduate student’s project. They asked if you would bring the kid back in for an evaluation appointment, free to you, we’re just doing evaluations of kids who were in the NICU. So we go in there and it’s a doctor that’s there and she checks him out. And we had taken him to pediatrician appointments and they said, oh, he’s delayed because he was too early. He’ll be cognitively… he won’t do things at the same speed. But one thing that was different and we didn’t recognize it, was that his toes pointed straight down and his legs were scissored, so his legs were crossed.

And when you picked him up, you could pick him up. His arms would still be tight. Most babies are so flexible that when you pick them up by the hands, they’re just gonna dangle. He had his arms at a 45 degree. He could hold your fingers. They checked him out and they said, we suggest you go see this specialist.

At that point, we got an appointment with the specialist. They check him out. We laughed. They measured his head and they said, his head is really large. And then they looked at my wife and I and they said, oh, nevermind. [laughing] We both have extremely large heads. But so they did all this testing on him and then they said we believe that he possibly has cerebral palsy. They thought maybe hydrocephalus. They gave us kind of a laundry list at that point of what was potential. And that is really what … I have to say I went numb at that point. When they start saying all these things that I have no clue about and I have no idea about I just felt so helpless, so clueless, no idea. As I told you earlier I like to fix things and here was something in front of me that I had no idea how to fix and to be honest it wasn’t fixable.

David Hirsch: Was there some advice that you got early on that helped put things in perspective?

Bob West: [laughing] I would say no. To be honest, I would say no. It became, go see this person. Go see that person. Put ’em in this program, try this program. All of these things. It became more about another doctor, another physical therapist, another program. Again, nobody we knew had a child with issues. We had never heard of a family member or friend whose kids had issues like our kid. It felt very isolating. It felt very frustrating. It really put us on a… I feel like it’s almost like a treadmill or the little mouse wheel of trying to get help.

David Hirsch: Yeah. Thanks for sharing and not to focus on the negative, but what were some of the bigger challenges that you encountered related to Kyle’s situation?

Bob West: When they give a parent a laundry list of things that could possibly be wrong with your kid, I don’t fondly look back at that doctor, to be honest. And I think doctors are better these days, from what I understand. They’re doing a better job of training doctors on these things.

But my wife had a medical background. She at least could understand some of the terminology they were using. A lot of times, I left the appointment and said, I’d look over to my wife. Okay, what did that guy say? Or what did she say? I have no idea what they’re talking about. And it also started surgeries. He had a hernia, a double hernia. I also remember one day I was at home and this bus came up to pick up my son to take him to a preschool program at three years old. And that just scared the living daylights out of me as a dad to see my kid go off into the hands of these people. I have no idea who they are. I have no control over… It just felt very uncontrollable, the situation. That’s the kindest words I can say about it. It felt like things were happening that I just had no ability to understand or affect.

David Hirsch: I remember there was a turning point, and I don’t know if it’s THE turning point, but A turning point, and I think it was while you were working at “Focus on the Family” when Kyle was seven. What’s the backstory? That James Dobson actually…

Bob West: Yeah.

David Hirsch: …learns about Kyle’s situation and engages with him.

Bob West: Yeah. So again, when he was five, we decided to move to Colorado. I had worked at this print shop and then got on at “Focus on the Family” as the computer guy. And they had like a company picnic, so they were having a company picnic at a park. So we go as a family. At this time we had actually had all three of our kids, so we’re all there as a family. And they had little games and things and I was trying to shoot baskets into a hoop that’s too small for me to make, to win some prize. And Dr. Dobson happened to come walking into the picnic. People were greeting him and my son, who… By the way it’s always interesting cuz the doctors had said he might not talk, he might not be able to read, they give you this laundry list. When he started talking in full sentences, this kid was verbal and vocal beyond anything else I’ve ever seen. And that used to throw people off when this little kid in his little wheelchair comes up to them. He also has a lazy eye, some physical issues, but he speaks like an adult as a seven year old.

So Dr. Dobson comes up and he wants to meet him, so he tells my wife to roll him over there. So he comes up and he just starts talking Dr. Dobson’s ear off. And Dr. Dobson is just impressed. And he says, I’d love to talk to you more. He says please call my admin assistant and arrange a time. I’d love to talk to him more.

And so then they move on. Of course, our son, it’s a Saturday. Our son says, call her now. We’re like, she’s not at work. [laughing] You do understand it’s till Monday, right? So Monday morning my wife calls. My wife says that we met Dr at the picnic and he wanted to talk to our son. And of course Patty says, Patty was his admin assistant at that time. She says, he’s a very busy man and I’m not sure when we’ll be able to get you in, but I’ll call you back and let you know. We’ll figure it out. So she must have gone off and talked to him because a few minutes later she calls my wife and says, can you come Thursday? [laughing] So my wife brought him down to the “Focus on the Family” campus. I was working that day, so I met them at the front lobby and they said, oh, Dr. Dobson’s recording in the studio. He’s recording some radio shows. And then they bring Kyle into the studio. And so he’s there at the broadcast studio table and they’re talking, and what we didn’t know is they were also recording.

They started recording this conversation with Kyle and Dr. Dobson, which lasted about an hour. It really was a neat conversation. Dr. Dobson was very gracious to my son. After that was done, we wrapped it all up, went away. Interestingly enough about I’d say it was about a week later, they called me and they said we were actually recording that conversation and we’d love to turn this into a broadcast.

The broadcast was called “Seven years old, going on 25.” And again, because my son is just so verbal, it was just an amazing conversation with Dr. Dobson.

[Voice of Dr. James Dobson] Today we’re gonna be revisiting what might be, and I think is, one of my very favorite interviews of all time. Let me take our listeners back 11 years to the time when a boy named Kyle West was attending a staff picnic and so was I. And I was walking along and I heard this little voice behind me. And I turned around and it was, I found out later Kyle West, and he was addressing me. So I walked over to him and I leaned down and we had an absolutely delightful conversation.

I found that this is one of the brightest and most interesting and intelligent young men that I had ever met. He wasn’t a young man at that time, he was just a boy. But he just captivated me and so just sitting there spontaneously, I said, Kyle, I would love for you to come see me in my office sometime.

And Bob, you and Sue brought Kyle up to my office. And we came in and sat down and the recorders were rolling.

[Audio excerpt from the Dr. James Dobson broadcast]

Dr. James Dobson: Tell me why you wanted to talk to me.

Kyle West: Since you like to learn more and more about God, I thought you might like to hear this story about how God helped me through a surgery.

Dr. Dobson: I really would like to know that. First of all, Kyle, you have cerebral palsy, don’t you?

Kyle: It’s pronounced cerebral palsy.

Dr. Dobson: Cerebral, yeah, that’s right. Can you say that? Cerebral palsy.

Kyle: Yes. Cerebral palsy. It’s difficult, hard work.

Dr. Dobson: Okay. Explain to me what that is.

Kyle: Cerebral palsy, as I call it, is a disability.

Dr. Dobson: Right.

Kyle: Like blindness and stuff. Only this time it’s a problem with the legs. Cerebral palsy makes the leg bones weaker than everybody else.

[Fade out audio of the Dr. James Dobson broadcast]

So they broadcast that probably a month later. I’m still working in the IT department there, and I get a call one day and they say, what do you want us to do with the letters? And I said, letters, what letters? And they said people have sent in letters to your son. So I’m thinking, okay, there’s a letter or two. I don’t know. So I say, yeah, you can just put ’em in the interoffice, send ’em in an envelope to me. I get multiple envelopes of letters, multiple envelopes of letters, and they are just amazing.

There were letters from people who just said how inspired, that he was inspiring to them. Some people with disabilities themselves who were struggling to the one that really just in my mind was amazing, was a story of a man who pulled over to the side of the road while listening to the broadcast and gave his life to Christ just hearing my son.

David Hirsch: Oh my God.

Bob West: And you just think about that as a dad, and you look at the stories of people saying your seven year old is inspiring to them. It really is humbling. It is really quite a blessing. It just makes you realize that, you know what, I have no clue what’s going on. I really have no clue what’s going on. But I know Someone who does, and He has a plan that is just so much better than mine. It also made me feel that I can be okay. I know that it’s gonna be okay. Not that everything’s gonna be okay. Kyle’s had over a dozen surgeries over the years. Those aren’t okay, but I know that we’re gonna be okay because it’s not my plan. I can let go of what I think should happen and just let it happen the way it’s gonna happen.

David Hirsch: Yeah. Thanks for sharing. It is a very inspiring story and I think it just keeps getting better and better. So I’m curious to know what impact Kyle’s situations had on his younger siblings, your marriage, or your extended family for that matter.

Bob West: I know that at one point when our son Jonathan, who is the middle child, there was a point where he said, I wish I had cerebral palsy as a little kid.

David Hirsch: Oh my.

Bob West: When I think about that, that’s not what he wanted to have. What he wanted was the attention of.. He sees therapists coming to play with Kyle, multiple people are coming into our house. He sees us having to run him to different programs. He sees us having to have special equipment. He got a lot of attention because of his disability which my middle son wanted. And I think it’s affected him over the years. I think it’s been a struggle for him at times. They’ve half jokingly, but I know it’s not jokingly, have said he’s our favorite. And that is not the case. The case has been that we’re worried parents about him.

My middle son went on, got his degree in music. He’s a music teacher in middle school. He’s doing a fantastic job. Those dreams I had for my children, he was able to fulfill. He was able to go onto college, he was able to graduate. He’s able to have a good job. All of those things I never had to worry about, or at least I didn’t feel like you had to worry about as much. And our daughter as well, our daughter is graduating actually this week from college with her degree, and she’s going on probably gonna get a wonderful job. And she’s an amazing girl who can take care of herself. She’s great with her finances, does all these things. I didn’t worry about that with her as much. I’ve always worried about whether my oldest will have a future and what that future will be.

David Hirsch: Yeah. Thank you for your transparency and authenticity. It’s a real issue, the issue of siblings and family balance.

Bob West: Yeah, it is.

David Hirsch: And it’s easy to be drawn to the child with the greatest needs. Not intentionally, but maybe inadvertently, not paying an equitable amount of attention to your other child or children for that matter. So thank you again.

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

David Hirsch: So I’m thinking about supporting organizations and I’m wondering what organizations come to mind that Kyle’s benefited from directly or perhaps your family has benefited from?

Bob West: As far as organizations for us, we really struggle to find those supporting organizations. The funniest story we have is that my wife was in line at the supermarket with our son. An older gentleman with a little fez on top of his head walked up and handed her a card and said, you need to talk to our guys about our hospital. And we were like, Shriners Hospital? What the heck? We had no idea what Shriners was. And so my wife called, started finding out about Shriners Hospitals, the absolutely amazing things that Shriners Hospital does.

Sometimes you can think we have an okay income. We’re a middle income family. We don’t qualify for some of these things. And Shriners says it’s not about that. It’s can we help the child? We had a surgery with Kyle. They actually went in, they released his hips, so they, because his legs scissored, they went in and they actually cut the tendons and muscles in his hips, stretched them out and reattached them, but then put him into this A-frame kind of casting. So his legs were casted, facing at about a 20-degree out and then bars across that. And they did this surgery at the local hospital. They gave us CoTylenol to send him home with. And that was one of the absolutely most miserable experiences. Our son was in pain. It’s because they’re cutting muscles and those muscles start spasming afterwards. The kid is just in severe pain and there’s nothing CoTylenol is gonna do about that. So it was just a ridiculous situation. Guess what we found out about the Shriners Hospital? They keep the kid as long as they need the kid to be in the hospital to manage the pain after the surgery. So the next surgery Kyle had, they wanted to rotate his legs 20 degrees, cuz he was starting to point his toes out as a compensation to be able to walk. They wanted to rotate his legs. They had the surgery. They also did a spinal tap for a week so that he could get through all this. Cuz they know, they said they know for the first week that the muscles and everything will spasm. So they do a spinal tap. The kid woke up from surgery and wanted a hamburger, right? He didn’t feel a thing. And then after a week they removed it. They made sure everything was good and then sent us home. None of this cost us anything. Even the flight. Their closest hospital was in Utah. The local Shriners Club gave us the money to fly to that Shriners Hospital and have those surgeries.

So these kinds of organizations that are out there that are doing just amazing things. But it frustrates me that not many people know about them. And again, we didn’t know about them until a guy saw us.

David Hirsch: Yeah. Thanks for sharing. You don’t hear the Shriners name very often but I’m very familiar with those red fezzes. I have one of these red fezzes, and it wasn’t mine, it was my grandfather’s. And he was very proud of being a Mason as well as being a Shriner. I remember going to the Shriner circuses here in Chicago where they would put these events on annually. They raise money and they do exactly what you were saying. They pick up the tab for these families and if you’re not a recipient of the goodwill that the Shriners have created, you might be oblivious to the fact that they exist. Thank you for sharing that story.

Bob West: Yeah.

David Hirsch: I’d like to switch gears and talk about Need Project which in my recollection was founded in 2006. And my understanding is that it’s to support families and caregivers of those with special needs with local resources, information, emotional support, and help with their faith. And there’s a series of programs. You have podcasts, you’ve written a booklet. And I’m wondering what was the backstory on starting this, Bob?

Bob West: Like we were talking about with the Shriners, there were other organizations along the way. We met other parents along the way as well, and the parents would say, oh, have you heard about this? And you find out afterwards that my kid could have really benefited from this organization that’s doing good work, but it was just that we never heard about them. And that as a parent was so frustrating. And when I talked to other parents, they were saying the same thing. I hear more from other parents about organizations that are out there than I do about things that would help my child in that situation.

The other thing is that when you move. It takes about two years… When your kid, when your child gets a diagnosis, it takes you about two years to really get what I’d say in a groove of therapies and doctors and all of those things. It takes time to find the right doctors, to find the right therapists, to get in the right programs. If you don’t know about these things and you are unable to take benefit of those, it puts a strain on the family trying to figure out your finances when there are organizations out there that pay for durable medical or help you pay for durable medical. There are organizations out there that help you get onto Social Security disability insurance. There are organizations out there and their specific goal is to help these families get plugged in. But families don’t always know about them. And that just really frustrated me. And I said, you know what? There’s gotta be a way to help these families connect with the organizations. And also to understand that, you know what? I think a lot of times, like we talked about, not being able to maybe go out with friends or do things, especially, depending on your child’s needs, you can become pretty isolated as a family. Your child maybe can’t go to the other birthday parties, so you’re not connecting with families and things like that.

But, there are a lot of other families in that same boat. And really what we were looking at is we want families to know, number one, they’re not alone. While their diagnosis may be different and every child is different, there are similarities that we as parents, we as a couple go through. And then there are organizations out there trying to help and we really want to make those known to these families in the easiest way possible.

And that was really why we created Need Project. We said there’s a need in this area to be able to serve these families.

David Hirsch: Yeah. My hat’s off to you. And the way I think about it, Bob, is that you’re filling an unmet need, right? There’s all these needs that families have and they’re totally unaware of, right? And you’ve created this amazing resource through your website. And I’ll just emphasize that the programs break down into education resources, parenting resources, therapy resources, low income assistant resources, health resources and then the catch-all, miscellaneous. And I know that I’ve listened to some of your podcasts, which I really love, and you’ve broken them up into categories: some on marriage, some on parenting, some on intervention and therapies, and some are just inspiration and other. I’d like you just to spend a moment with this booklet that you’ve created entitled “Three Things I Wish Someone Had Told Me.”

Bob West: It took a lot of years for me to get out of what I’ve called the fog of being overwhelmed. I also spent I would say a portion of time being angry with God. As I said, I come from a line of fix-it guys, and to feel so helpless in a situation for a fix-it guy who wants to fix everything. And I think a lot of guys out there we want to be able to fix it. And maybe that gets us in trouble with our wives sometime because, when she wants to talk to us, we wanna fix her situation, not just listen. And I’ve learned that one. I’m not the fix-it guy there. I’m the listen guy. I’m learning that one. It’s only taken 32 years. [laughing]

 But it occurs to me that women are better at probably sharing with a friend or having a friend that they can share with of their struggles. I also think that most of the books that are out there on disabilities are written by wonderful women who’ve written some great books. But I would say that as guys, one, we’re not big on reading self-help books. We don’t do that. And number two, sometimes we are just silent because we’re trying to take care of everybody else. We see people falling apart around us and we’re trying to be the rock, so we don’t always process or deal with what we’re dealing with.

And unfortunately, for a lot of guys that can come out sideways. That can lead to unhealthy habits, even to the point of believing that their family is better off without them and they leave, or that they need to leave for various reasons. And again probably me being on the ADHD spectrum, I’m saying I need something that’s short attention span theater that will allow me to just get across…

There are three points that I really just wanted guys to understand. It’s a really simple booklet and those three things to me are, you know what? It is gonna be okay. You may not feel okay today. You’re not gonna feel okay every day, but you can do this. It’s in you. You have the ability to do this. Don’t fall for the lie that people are better off without you. That’s not a true statement. Your family needs their dad more than you will ever know. Not running away. Not stepping away, even though it feels like it would be so much easier to do that, tough it up. Stand up and you’ll see it gets better.

The more that you were there for them, the more it is better for them as well. So that was really the goal of that booklet, just to say, you know what, we’re all in this. You’re not the only one and you can do this and we’re here for you.

David Hirsch: Yeah. My hat’s off to you. I think keeping something short and simple means that more men will be likely to read it and take advantage of the messages that you’ve included. So thank you again. So I’m thinking about advice and I’m wondering if there’s any advice perhaps that you could offer to a dad maybe who finds himself at the front end, or maybe he’s been at it for a number of years beyond the scope of what we’ve already discussed.

Bob West: I hope, but I know that this isn’t always true, but I hope that they have somebody that they can say they’re angry with. I hope they have a friend, whether it’s a mentor, their dad or an older man they know, or even a dad of a child who’s a little older that they can just be able to just dump the load that you’re carrying. Because I know it is so good. Even if you have to go out into the forest and scream at the top of your lungs, all of the things that you’re mad about, that’s refreshing as well. But you’ve got to find someone you can talk to. If that’s your spouse, man that’s amazing if you can do that.

The other thing that I always try and help with is, we are all individuals. Our spouse is not us. They do not have the same life experience or upbringing, so they’re gonna process this so different than you will. And understanding that at times she’s crying and falling apart and you’re the strong one, and at times you need to be the one falling apart and she’s the strong one. You need to understand that you’re not always gonna be in the same place at the same time. And that as a couple, give yourself some grace to be able to have those emotions and not think, oh, I have to number one, fix it and number two, oh it’s because I am doing something wrong.

Sometimes we just have to let people process it in their own pace, and you have to process it in your own way. Figure out what that means for you, whether it’s a mentor, like I said, screaming in the forest, getting an axe and going chopping down a tree, something that allows you to blow off the steam to process what you’re thinking.

I’ve been that rock that doesn’t share for a lot of years with not a lot of words, but we still have to figure out how to do that. We still have to figure out how to do that in our own way.

David Hirsch: Yeah, great advice. Find others that you can connect with and recognize that you and your spouse are processing things at a different pace and at a different time and giving one another the grace to understand that. So thank you for that point. I’m wondering if there’s anything else you’d like to say before we wrap up.

Bob West: I love that you guys are doing a dad-to-dad thing because I think mentorship of men has been missing. I think it’s something that we need to figure out how to do. Again, it doesn’t have to be an emotional thing. If you go play softball with an older mentor. I remember one time I was walking into church and it was one of those days where I was particularly just like, how are we gonna do this? How are we gonna make it? And I saw pulled into the parking lot a few spots over from us was another family who went to our church and daughter had spina bifida. And I saw their doors open and they had, I think they had five or six kids. Everybody spills out and the dad gets up in the back and he opens the back and he grabs the wheelchair and he scoops up his daughter and he puts her in her wheelchair. But the whole time they’re like laughing and joking with each other and the family goes walking in, they’re all smiling. And just seeing them walking through the parking lot as a family and smiling and being okay, I thought, okay, I can do this. We can do this. And those moments that helped me make it through. 32 years of marriage is not easy, just in general. But my wife has put up with me for that long and we’ve been able to make it this far not because we’ve been perfect, not because it’s been it’s easy. But there have been those moments along the way where we’ve made the choice to say, we can do this.

David Hirsch: Yeah. My hat’s off to you. So let’s give a special shout out to Lindsay Blair for helping connect us.

Bob West: Yeah, she’s doing an amazing job for us. She’s been a blessing to Need Project and just helping us connect with resources and build up our local resource database and find podcasts, and help us connect with those resources as well. Love having her.

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

Bob West: The easiest way is just our website. That’s NeedProject.org. They can go on. We have a “contact us.” It’ll email us. You can also see all of our resources are there. You can also see my family’s story, how it’s gone. I don’t think we even touched on what Kyle has done up to this point. But being in his last year of his PhD in ancient history, reading four different languages and testing out on those languages and writing. Currently his dissertation is on disability in the ancient world. Like how they worked through those things or how it’s written about. The kid is just doing amazing things and it’s not that all of our kids will get there or do that, but our kids are gonna do way more than what the doctor who gives you the initial diagnosis says. Never believe him. Never believe him.

David Hirsch: [laughing] Yes. Trust but verify is the way I think about it.

Bob West: Hah hah! There you go. Exactly.

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

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

Bob West: Thank you for having us.

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

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

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

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