246 – Paul Peterangelo of Tonowanda, NY, Father of Five Daughters Including One With Down Syndrome

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.

Paul Peterangelo: I can tell you that Amanda has made every single person in our family bar none better human beings because in her we really see what God wants us all to do, which is to love one another unconditionally regardless of what your developmental status is. You know your color is. What your race is, it doesn’t matter to her. And consequently, it’s never mattered to any of my kids either.

Tom Couch: That’s our guest this week, Paul Peterangelo, a clinical supervisor at Fidelis Care, who has spent much of his medical career taking care of emergency room patients. Paul and his wife, Renee, have five children, including Amanda, 26, who is Down syndrome. We’ll hear Paul’s story on this week’s 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.

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

David Hirsch: And if you’re a dad looking for help, or 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 now let’s hear this intriguing conversation between David Hirsch and Paul Peterangelo.

David Hirsch: I’m thrilled to be talking today with Paul Peterangelo of Tonawanda, New York, who is a clinical supervisor at Fidelis Care, director of worship band Psalm 151 at St. Amelia RC Church, and father of five girls, including one with Down syndrome. Paul, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Paul Peterangelo: Thank you very much for having me. I’m excited to be here.

David Hirsch: You and your wife Renee have been married for 29 years and are the proud parents of five girls: Sonya 37, Amelia 36, Deanna 28, Amanda 26 who has Down syndrome, and Tabitha 21. Let’s start with some background. Where did you grow up? Tell me something about your family.

Paul Peterangelo: Okay. I grew up in another suburb of Buffalo called Amherst, New York. I was the middle of three children. I’m sandwiched between my sisters, Kathy and Kyle, and we grew up in a fairly normal nuclear family. My father and mother were both teachers. My dad a music teacher, and my mother, a history teacher, but she taught everything.

Paul Peterangelo: My mom took off actually to raise us when we were younger so we would have that adult presence in the home. It was after we were finally, were a little bit older and we were all in school that she finally returned to teaching. She started primarily going back to Catholic schools and found a great ministry there teaching for, pretty much till retirement age.

David Hirsch: Excellent. You mentioned that both your parents are teachers and that your dad was a music teacher, and I’m wondering how would you describe your relationship with your dad?

Paul Peterangelo: My dad and I got along great. He was the male figure in my life, in a household of women. So he taught me, did all the stuff a dad would do, but he was somewhat limited in some things because he was actually legally blind due to the fact that when he was born, he had a forceps delivery, which kind of crushed his optic nerve. Consequently, he never drove. My mom was always the driver of the family, and she’s the one that taught me how to drive, and my dad really couldn’t teach me much about like automotive repair or things like that.

Paul Peterangelo: But he did teach me a lot of the important things in life. Specifically a faith in God. Specifically being loyal to our family and to my mom. And he was a great role model in so many other ways. He was a former Boy Scout and I was in scouts, and I actually got to the rank of Eagle Scout at 13. And that was because my dad was right there with me and so was my mom right along the way.

Paul Peterangelo: But again, you could see there was some separation with my sisters and my dad and me that my sisters would do motherly things with my sisters and my dad would do the guy things with me.

David Hirsch: Yeah. It sounds like quite an individual having to overcome the obstacle of being legally blind and then going on to have a full career, being married, being a father to three, you and your sisters, and I can only imagine some of the challenges that might have posed. I’m wondering when you think about additional takeaways in addition to your faith and loyalty to your family and being a, what I would call a early achiever because that’s about as young as I’ve ever heard somebody becoming an Eagle Scout. Usually it’s oh, I’m gonna be turning 18 soon. I’ve gotta get my project done. You guys were ahead of the curve.

Paul Peterangelo: Yeah. We were ahead of the curve, but I think a lot of that was also a little parental pushing along the way too. My mother used to pick which merit badges I should get based on the appearance of the merit badge and how it would correlate on my sash. It’s amazing I never got hog raising, but it would’ve been a little difficult out in the suburbs, but it was a lot of fun. And for my project, I actually did a bikeathon, which raised money for needy scouts to go to camp. So it was great cause we had police involvement to watch the rioters. We had a lot of corporate sponsors I worked with. So it was a great learning moment for me and I thought it went very well.

David Hirsch: Excellent. Thanks for sharing. So my recollection was that you have a number of degrees mostly in the area of nursing, and I’m wondering, when you were completing your education, where did you see your career taking you?

Paul Peterangelo: Actually I first went to school to become a photographer. So I went to the State University College of Buffalo where I got a fine art degree in photography which wasn’t exactly what I was looking for, but my mom went to Buff State so it’s probably why I went there at the time. But I’d already been working for some newspapers and, I got the degree just because I felt why not?

Paul Peterangelo: But after I got it, I was regretting it because, I didn’t know what I was gonna do with it, [laughs] so I went back to school and became an art teacher. So then as an art teacher I enjoyed that, but that was during the time of a lot of cutbacks and teachers in the nineties. So I could not find anything but a substitute teaching job.

Paul Peterangelo: And then finally a job in a Catholic school, surprisingly as a music teacher, not an art teacher. Go figure. I had a discussion with my family cuz I really wasn’t happy about that. And my sister Kathy is the one that said, all through college you’ve been working on an ambulance corp, you went from an EMT to a paramedic and you seem to really enjoy that.

Paul Peterangelo: And I I was also a volunteer fireman and I just found I really enjoyed helping people and she suggested I look into something in the medical field. So I looked at becoming a physician assistant or a nurse. And after being accepted to Gannon for PA school, and also getting accepted to Sisters, albeit with a full scholarship, I decided to go to Sisters and become a nurse, which I think was God definitely leading me, cuz that’s where I met my wife Renee.

David Hirsch: So you took more away from the nursing program than most people that have graduated there?

Paul Peterangelo: I, yes, I definitely did. Maybe it was my line about asking her when we had to partner up and saying, would you like to do my bed bath? Which she politely declined as her school would not permit men and women doing that, but it’s okay.

David Hirsch: Okay. My recollection was that you worked as an emergency room nurse for quite a long time.

Paul Peterangelo: Yeah. During nursing school, I, I started working in the emergency room as an aide and I actually loved it. It was just an extension of my being a paramedic. It’s interesting that when you’re an EMT and the patient gets too complex, you hope there’s a paramedic nearby that’ll show up to take the patient off your hands. And same too, I found as a paramedic when the patient got really bad and you’ve exhausted everything you can do in the field, you’re just praying you can get him to the hospital soon enough so the nurses and doctors can take the patient off your hands.

Paul Peterangelo: And now here I was in the emergency department, the last line of defense. When I graduated, they had a rule that you couldn’t go right into emergency. You had to have a year of medical surgical training. So I started on a neurology floor. However, after six months, I was actually invited to interview for a different hospital emergency department where a lot of our doctors that I knew from Sisters were, and I ended up starting working in the emergency department on the night shift.

Paul Peterangelo: And I stayed on the night shift for 15 years.

David Hirsch: Wow.

Paul Peterangelo: Yeah. [laughing] But I finally progressed to becoming a charge nurse and finally a day charge nurse. And I stayed there pretty much until I was recruited to be a clinical consultant. And at that point I started consulting across the country, helping emergency departments with their processes, with handling cardiac arrest and actually assessment of people to see if they were having a heart attack or not.

Paul Peterangelo: So I really found that very beneficial. But the travel was unbelievable and it took me away from home way too much. So I didn’t stay long in that role. And then I went to become a supervisor in an emergency department which eventually progressed to becoming a manager of emergency department, where I also start, took over in ICU, a critical care flow pool and transport team at the same facility.

Paul Peterangelo: And I did that for another six years. So in total I was in emergency for jeepers, God, I wanna say about 25 years.

David Hirsch: Wow. That sounds like an extraordinary commitment. And I can only imagine the harrowing situations that you’ve observed, if not were firsthand involved with over such a long career, particularly early on.

David Hirsch: Like you said, it’s the last defense, right? When somebody’s really not at their best, and lifesaving techniques are required on a daily basis is just, it seems like it would be overwhelming from a psychological or emotional standpoint.

Paul Peterangelo: You had to learn really quickly something that I actually learned from M*A*S*H, from Alan Alda. And I’ve passed it on to my one daughter who’s a doctor now, and that is, there’s two rules in medicine. Number one is, sadly, sometimes people die. And rule number two is sometimes everything we do doesn’t stop number one from occurring.

David Hirsch: Yeah. That is the objective reality. It’s just, it’s like a numbers game almost. The probability of outcomes. You can do everything you were trained to do and wasn’t enough. And some people, looking at it from the glass being half full beat all the odds. There’s no reason they should be alive and they miraculously make the turn and life goes on. So the highs and lows, that’s what I heard you referring to.

Paul Peterangelo: Absolutely.

David Hirsch: So let’s switch gears and talk about special needs.

Paul Peterangelo: Yeah.

David Hirsch: First on a personal level and then beyond. So I’m curious to know, before Amanda was born, did you or Renee have any exposure to the world of special needs?

Paul Peterangelo: We honestly did not, other than what we had in nursing school. With regards to Amanda, who has Down syndrome, we knew the clinical. We knew that, Down syndromes, they have an extra chromosome, so it’s 21, so that’s why it’s referred to as Trisomy 21. It’s a genetic disorder, and so we knew the basics that, facial symmetry, hand symmetry, things to identify life expectancy, et cetera, et cetera, but we never actually had any real life experience with the special needs community or an individual special needs person.

David Hirsch: So when was Amanda’s diagnosis made and how did it come about then?

Paul Peterangelo: Yeah, Amanda was born on July 14th, a day before her sister Deanna two years before her. We went into the hospital. We had Amanda, and we were both overjoyed. She, to all intense purposes, looked perfect.

Paul Peterangelo: So like any new parent, we were excited beyond belief. I went home that day cause I had to get ready for the party for Deanna, which was the next day. And yeah, I was convinced I had another perfect child and I’m almost ashamed to say the word perfect because she is perfect. But at the time I felt that she didn’t have any disabilities.

Paul Peterangelo: Renee, my wife, was more attuned to that as she was watching the assessment the nurse was doing right after delivery. And as she is a labor and delivery nurse, or was a labor and delivery nurse she definitely had an inclination, and it was the next day on the 15th that she called me and said the doctor confirmed what she had suspected, and that’s that Amanda had Down syndrome.

Paul Peterangelo: And I can tell you I felt like I was punched in the stomach. I just broke down crying. You start the what ifs and the futurizing, which causes anxiety, cause like how, what? I have no idea what to do. I have three other kids that are, and then having to go to the party and put on a smile, and I, it was difficult. It really was.

David Hirsch: Yeah. Thank you for your authenticity and transparency. As you were describing that situation, I felt like God was right there next to you. And it seems like it was one of those bittersweet experiences. You’re enthusiastic about having another child, you’re celebrating the birthday of your third child the next day, and then the cloud comes over your family. And there’s some darkness. And I’m wondering if there was some advice that you received early on or along the way that helped those clouds dissipate?

Paul Peterangelo: Yeah, first off, it was my mom. The first call I made after that was to my mom and I was just, almost hysterically crying like a child to her and like the mother that she’s always been, she comforted me on the phone and she just said to her, you know me, that, hey, you know what, she’s gonna be a little different. She’s still your child. She’s still blessed to be in the family. We’re gonna… she’s a blessing to all of us and we’re gonna all get through this and we’re gonna make it special.

Paul Peterangelo: And she really ended up putting it more into perspective which really helped me. And of course she came over for the party that day and the first thing she did was just give me a huge hug and just said it’s gonna be okay.

David Hirsch: Yeah. I think of situations like that as like the angels appearing in our lives…

Paul Peterangelo: Amen.

David Hirsch: …at the time. And it helps you get through some pretty difficult or challenging situations. And not to focus on the negative, but what have been some of the bigger challenges in raising a daughter like Amanda with Down syndrome?

Paul Peterangelo: I think the biggest challenge has been more just learning who to look for resources, because if you’re not familiar with the special needs community, you need to find that out quickly. Because it’s like with anything, sometimes you know people are prideful and they don’t wanna reach out for help. I can handle this on my own. But I think by humbling ourselves very quickly to say, okay, yes, we’re nurses. Yes, we know what this is all about, we really had to concede that we didn’t know a thing about what it was about. And immediately luckily our pediatrician was wonderful. And she referred us to not only services that were available immediately that we signed up for, but also just other people in the hospital community that also had Down syndrome children that reached out to us to give us counsel.

Paul Peterangelo: And that was truly a blessing to us. Amanda actually started when she was newborn with an in-home care specialist and it was just amazing to see things they would do. Like I had always, even as a nurse, we knew that tongue protrusion is a pretty big physical feature that a lot of people associate with Down syndrome. And what we learned quickly is that’s a learned response. That can be unlearned, but you have to be on it right away. So at a young age she would be laying down on her side and they’d put a mirror next to her. And we were also taught that every time she did stick her tongue out, we pushed it back in.

Paul Peterangelo: And we did, we pushed it in a lot in those early days. But today, she doesn’t have any tongue protrusion. And for the best part, she looks normal. As normal as people would define normal. Of course, we don’t define normal by that. We’d say it by God that we’re all normal. But yeah, I think it was the early intervention that really helped kickstart us into the programs.

David Hirsch: Yeah. It’s great that you were able to get that advice and to have others lean in and to give you some direction on what to do at such an early age. And did I remember in a prior conversation that you mentioned that Amanda is nonverbal?

Paul Peterangelo: She is. She’s got aphasia. She, she says some words and we can most of the time understand her needs. For other people she doesn’t. She has had a device, speech device years ago. It was called a Dynavox, which is one that would have pictures. She could identify the picture and it would say hamburger cuz that’s what she wanted to eat. And now with better technology, she’s advanced to an iPad, which has many of the same features, but we can input pictures of our family photos, phone numbers, things like that. So she can actually have that not only on her iPad, but actually on her iPhone. So she can communicate in, in the community, and that’s been a great help. In addition, she and we have learned basic sign language, which allows her to also express needs and help us to understand.

Paul Peterangelo: But I gotta be honest, even today there are still occasions where she gets frustrated, we get frustrated cuz there’s something that she wants to tell us we just can’t get it. We’re just not grasping it. There’s not a picture for her to push on the device. It’s not a word, and there’s not a sign language that she’s able to express. And you could see the frustration in her and it conveys over to us as well. But the best we can do is sometimes just give her a timeout. Give her a hug. Okay, let’s try this again in a little bit. And that usually brings about where we can figure it out.

David Hirsch: Yeah. You sound so calm, like Zen Master as you’re describing it. I suspect that in the heat of battle, if I can call it that, the tension is raising, you’re frustrated. She’s frustrated, and somebody realizes that they have to hit the time out button. So thank you for being so open and sharing about that. I, again, not to focus on the negative, but did you also mention in a prior conversation that she’s a runner?

Paul Peterangelo: She was a runner growing up, which was a very difficult thing for us. In fact, one time when she was probably seven, eight, we had just come home from the grocery store with all the kids and we were all bringing the groceries in. And all of a sudden we said, okay, where’s Amanda? And we could not find Amanda. We’re searching through the house, the backyard. We’re like, oh my goodness. We mobilized the whole family because we have a lot of family in the area. Our neighbors, we had police, we had everybody out looking for Amanda. And it was finally after about, oh boy, a good hour and a half, two hours that a Tonawanda police car came back with Amanda very happily smiling in the backseat. You know that she had been picked up and the officer said that a neighbor down the street had seen her cross one of the semi-busier streets that was on the way to the ice cream store that she knew where the ice cream store apparently was.

Paul Peterangelo: But our hearts were stopped. And after that we ended up finding a tracking system, which again, it’s not like an Apple air tag back in the day. It was this big antenna thing and she had a radio transmitter that she, we would put on her wrist. The problem is she hated it on her wrist. She hated it, period. So she would literally pull skin off, pulling it off of her wrist. And she would get it off cause she just would. So then they recommended we put it on her ankle while she was sleeping at night. And that worked. But again, it wasn’t the best area to have it on someone to find them. And it was difficult because even when she went, it was a unidirectional thing to find her. So you had this huge antenna that you’re outside the house with. Cause we would’ve to practice using it. And it was one of those where you go a little one way and it goes beep.

David Hirsch: Oh geez.

Paul Peterangelo: And they said also the state police had it in their helicopters. I don’t know how that would even work, but yeah. And. It was interesting cuz the one trip we went to Disney, we brought it along and of course when they did our luggage check at Disney and going into the park, they were confused what this was. It turns out we ended up having to use it because she got out of the hotel room and luckily we found her down the hallway before she got too far.

David Hirsch: Wow. Thank God for the advances in technology, which make it so much easier for individuals to keep track of friends and family members. Loved ones.

Paul Peterangelo: Yeah. That’s actually one of the reasons we got her an iPhone. Not that she can call on it, but because of the tracking capability. And then actually that came in handy once when she was at an afterschool program or morning program, and she got on the bus. She went there. And all of a sudden, about an hour later, we get a call from the place saying, Hey, is she coming to program today?

David Hirsch: Oh my.

Paul Peterangelo: And we’re like, what do you mean? We put her on the bus and she should be there. And they’re like, she never got here. And they called the bus. And the bus said, oh yeah, we dropped her off. And they said, did the driver watch her go in? No. So we tra… we turned on the remote phone and luckily we found that she was walking around the neighborhood blocks away from the place.

David Hirsch: Oh geez.

Paul Peterangelo: So the teacher was in her car talking to us on her cell phone and we’re guiding her, okay, now you gotta go down this street. And oh, and she goes, I see her. So we were able to get her. But thank God that since she’s been getting older, she really doesn’t run like she’d used to. So That’s good.

David Hirsch: Yeah. Thanks for sharing. It’s sounds like a frightening situation when you realize optimally in the presence of your spouse and occasionally not in the presence of your spouse that one of your children isn’t accounted for. And that frantic feeling that you have. Hopefully that doesn’t last more than minutes or hours like you shared, but it’s visceral.

Paul Peterangelo: We certainly can relate to the movie “Home Alone”.

David Hirsch: Yeah. One other thing I think you mentioned in a prior conversation was that she’s had a thyroid condition and I’m wondering what’s that a result of, or is that just coincident with her Down syndrome?

Paul Peterangelo: We have a history of thyroid in the family, so most likely it’s more just genetic in nature. But because of that, she has to give blood draws to see where her levels are and see an endocrinologist so we can adjust the medications. And sometimes she’s really good getting blood drawn, but of late she’s gotten into a panic. Fortunately her mom or I can draw her blood at home. And then we bring it in and that’s usually a little more comforting cause it’s someone she knows and trusts. But her thyroid has been doing really well. It’s well managed and she doesn’t have any other chronic diseases other than that. So she’s very blessed in that regard.

David Hirsch: Yeah. Thanks for sharing. It sounds like there’s not been one challenge, but a whole host of different challenges and we’re not even talking about the psychological things that go along with being different. And I’m curious, was she mainstreamed educationally or did she do some special ed?

Paul Peterangelo: She started off in special needs classes. She started off as a child into Bornhava which is actually where we started her as an infant, where we had the home care person come in and that was a wonderful program, but she graduated out of that and then she was mainstreamed into classes as far as kindergarten, first grade, and that. As we know, and with Down syndrome, there are many different degrees of cognition and of how they are mentally. And so Amanda is on the lower spectrum of that. So we found that after a while, usually after about second grade, it wasn’t practical to necessarily keep her fully integrated into a mainstream class. And she ended up being in specialty classes. But we were trying mainly to get her integrated into basically activities of daily living that would be effectively used by her. And that’s where she’s at right now.

David Hirsch: Yeah. Thanks for sharing. I’m curious to know what impact has Amanda’s situation had on her siblings, your marriage, and the extended family for that matter?

Paul Peterangelo: I can tell you it’s been an interesting ride on that because, some people still don’t know how to deal with her I guess in the most direct ways. They love her and our family. But I know growing up, like my sisters would always have my other kids have sleepovers with their kids. But Amanda was never given that opportunity. But I can tell you now, at this point with her sisters, with all of them now being outside of the house, they have given her opportunities to sleep over their houses.

Paul Peterangelo: They have given her opportunities to go. My kids love Amanda. My kids are all very, very close to one another. And they’re all in the local area, in the Buffalo area, which is awesome. And it’s just a blessing to see how they all interact and they make sure that Amanda’s involved in everything. When both my daughter Mia and Sonya got married, Amanda was right there with her other sister’s, and the bridal party, and she had a blast.

Paul Peterangelo: I think as far as with Renee and I think we had to figure out how to divvy up chores with her. Renee really is the glue that holds everything in the house together. She is the one that coordinates and organizes all her appointments. Makes sure that she’s getting the services and being at the meetings. And while I do attend them as my schedule for work allows, Renee definitely does the yeoman’s share of the work on that. But again, growing up, the kids all pitched in and I can tell you that Amanda has made every single person in our family bar none better human beings because in her we really see what God wants us all to do, which is to love one another unconditionally regardless of what your developmental status is, your color is, what your race is, it doesn’t matter to her. And consequently, it’s never mattered to any of my kids either. So I think it’s just been a blessing. I once read that God only gives special needs kids to special people, and I don’t know if I’m special in any way, but I know that God truly blessed us. From my first apprehensions about having a special needs daughter to then seeing the plan and recognize how lucky we are.

David Hirsch: Yeah. Thanks for sharing and as proof of that, at least proof to me is that you didn’t stop having children. You had another daughter. One of my friends who also has only daughters, four daughters, jokes about him being the minority in the sorority. And I guess you’ve gotten used to that. You grew up with sisters, you have all daughters.

Paul Peterangelo: Yeah. If it wasn’t for my male cat, I’d be the only guy in the household. But he’s fixed, so I don’t even know if he counts. But yeah, it’s I never cared if I had a son, to be perfectly honest. I just feel incredibly blessed to have the daughters that I… Even my granddaughter. So I am just beyond blessed. I thank God every day for, I know I’m undeserving of all this, but I thank him for somehow giving these kids to me that entrusted me to them, and I’m just, beyond ecstatic for them. I think they’re just all awesome. And quite frankly, I have one daughter that’s an expert in kung fu. I have another daughter that is a third degree black belt in TaeKwonDo. My youngest is a second degree black belt in TaeKwonDo. So the running gag would be when my wife would hear a noise downstairs and she would say, you wanna check that out? I’d say, no. Why don’t you go wake up one of the kids that can defend themselves?

David Hirsch: [laughing] Yeah. It sounds like you took the teaching your girls self-defense a little bit more seriously than the average parents did.

Paul Peterangelo: It gave us a little peace of mind, especially when they would travel abroad by themselves and things like that. I’ll tell you that.

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.

Tom Couch: 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. You already mentioned one, the Bornhava, which is a preschool experience. And I’m wondering what other organizations that you’ve relied on, your family’s relied on, or Amanda has benefited from for that matter.

Paul Peterangelo: Great. Oh boy. Yeah, there are so many. We had worked with what’s called the Summit Center, which is primarily for autism, but Amanda did have autistic tendencies, and she did that for many years. In addition she received and still does receive services from a local group called People Incorporated. And People Incorporated is just phenomenal. They do in-house respite. They have respite houses. Amanda’s gone to their respite houses. She calls it her sleepovers. [laughing] And sometimes they gotta yank her out of her room because there’s a TV in her room. But oftentimes we’ll try and coordinate with some of her friends to be there at the same time. And she just has a blast because while they’re there, they may go out to movies, golfing, they may go to bowling or whatever, and they just have so much fun together. So that’s People Incorporated.

Paul Peterangelo: She also has another one called The Arc in Buffalo. And again, that’s another one that they go into the community to learn skills. She has a community hub respite worker that’ll take her out to go shopping, where she’ll go with the list, pick out her stuff, and then she’ll pay for it and figure it all out. And she really enjoys the independence.

Paul Peterangelo: And another one she’s involved with is something called Cradle Beach in our area. Cradle Beach is cool because it actually started in, I think it was 1888 and it started as a, just a fresh air mission serving underprivileged kids from the city of Buffalo. And it wasn’t until 1946 that they opened it up to special needs children and young adults, which was financed by the Buffalo Rotary Club. And the Buffalo Rotary Club continues to this day to be the sponsor for the special needs community to go there. And Amanda’s gone there many times. And now that she’s aged out of that, they’ve actually contacted her if she’d like to continue as a staff assistant. So she has her staff shirt and she’ll go there and she’ll spend the weekend and she’ll help new people with their luggage to get ’em situated in their rooms and things like that, helping with the food. And she loves it. And Cradle Beach again, one of the cool things, it’s right on Lake Erie. So they’re right on a beach, but they also have a lot of great things, a lodge, a huge treehouse, which is wheelchair accessible. And a lot of the money that they’ve gotten, not only through corporate sponsors but one Jim Kelly, who was the quarterback of the Buffalo Bills and is in the Hall of Fame. We talked about, I know you and I, Jim’s son, Hunter, had something called Krabbe Disease. And he died some little bit ago. But Jim was very near and dear to the special needs community, so he financed the main lodge that they have, which is huge. He’s also built a lodge for the people to sleep in, which is called Hunter’s Lodge after his son, and he still remains active in different things with that as well as many of the other Buffalo Bills.

Paul Peterangelo: It’s really just wonderful to see the, community rallying around. And I think that’s one of the things we love about Buffalo is there are a lot of resources for special needs here.

David Hirsch: The list goes on and on, and that does sound like that you’ve been able to tap into a lot of these local resources from an early age and then throughout Amanda’s life and let’s not overlook Special Olympics.

Paul Peterangelo: I’m glad you brought it up ’cause I was gonna say, I’d be remiss if I didn’t mention Special Olympics. So yeah, Special Olympics, if people have any special needs child, I would highly recommend you get your child actively involved with them. Also for yourselves, send… don’t just drop your child off, be a part of it. Become integrated into that family of special needs. That has been a joy to us and sometimes there’s some sadness involved in it. You’ll see kids with all and young adults with all sorts of different disabilities, but when you see the absolute joy they have, and not only being with each other training, but competing with one another.

Paul Peterangelo: And they honestly don’t care if they win or lose. And I shouldn’t say they don’t care because yeah, some of ’em get a little upset because I took a third place ribbon and they’re frustrated. But after they get a little understanding, they’re like still showing it off. Again, the stories are, there was a special event where Amanda was running a, I think it was a 50 yard run, and one of the kids fell down and every other kid stopped.

Paul Peterangelo: They went back and they’re, all of a sudden they’re chatting with her and helping her up and then they all got up and finished running the race together. And I just, just, it just touches your heart and you just look at that and you say, that’s what it’s all about to help someone else when they need it.

Paul Peterangelo: And it just gladdens my heart. I myself I’ve had a great time cause I’ve made a lot of videos for Special Olympics. I think I sent you some of the links. We would do it at the end of the season. I would put it all together into a presentation and have a awards banquet for everybody, which the kids always look forward to.

Paul Peterangelo: We’d have a nice meal and then we would adjourn to the auditorium and we would do it like a movie premier. And they were the stars and they knew it. They’d have popcorn, they would’ve a red carpet to come down and we would put it up and we would show this movie, which is all them put to like popular music of that year.

Paul Peterangelo: And it was so great to me and it just made me tear up every time I would hear them so excited to see themselves on the screen and like cheering each other when they have the race sequence. It’s just really an amazing experience you can’t describe. And then to have them come up and tell you and give you a big hug and say thank you, because you know how much it meant to them. It is just an unbelievable experience.

Paul Peterangelo: I would like to just say that one of the young men who was special needs, who graduated from the team and became a coach, his name was Eric. Eric was just a wonderful guy. And we were at a banquet at the end of the year and he collapsed. I was there and I ran right over, and I was able to revive him and. He was actually working at a grocery store in the deli department and a few months later he collapsed again. And this time he was not resuscitated.

David Hirsch: Oh my God.

Paul Peterangelo: And I just remember going to his funeral and seeing his parents and his mom just saying, you weren’t there this time to save him and [sniffing] I said, no I wasn’t. But you know what? He’s with God and you know that he’s always gonna be a part of all of us. Yeah, it’s part of the community is we’re there to support each other in the good times and the bad. And his parents are actually the coaches of the swim team. It was tough for them to come back without their son being there as a part, but they said they needed to do that and they still do.

David Hirsch: Yeah. Thank you for sharing. As I’m wiping the tear from my eye, as you recall that story about Eric, very powerful. Sad, just because he died at such a young age and under the circumstances. But I want to give the testimony to your videography skills because I did watch some of these videos that you shared with me and one had the opening with the Star Wars, if you remember this one.

Paul Peterangelo: Yeah.

David Hirsch: In addition to the videographer work that you do, you’re also a coach and you’re the team nurse. So when you say, you encourage people to immerse themselves, you’re not just saying that by words, but you’re demonstrating that by your actions. So I just think it’s exemplary the level of commitment that you’ve made Paul, to people in your community vis-a-vis Special Olympics and beyond, for that matter.

Paul Peterangelo: It’s really not a commitment at all. It’s a blessing to be a part of it. And again it’s seeing my kids. I’ll be coaches if you look at the credits on those videos. My wife, my daughters, they’re all helping edit. They’re helping me when I’m like saying I’m not sure what to do here. Cause you know, some of the kids are more techy. [laughing] I’m getting, it’s just a wonderful experience. And I guess that’s part of, the part even with my, our mission that with the group, you know, our Psalm 151. All my kids have been a part of that at some time in their lives. And we have inclusion of Amanda as well.

Paul Peterangelo: And every year when we do Silent Night, Amanda is the one that is right in front of the band and she does the sign language for it. And I can tell you after that song, there’s usually not a dry eye in the place. But it’s just she is so proud to go up and praise God. She’s so proud to just be there.

David Hirsch: It’s obvious that spirituality has played a really important role in your journey. In addition to being the director of this worship band, Psalm 151, we came in contact with each other because of your Bible Study Fellowship, which is a weekly meeting that you lead on Wednesdays at 5:30 AM and that seems a different time of the day than most people are getting up and focusing on their spirituality. So what’s the backstory there?

Paul Peterangelo: In, in fairness it’s 6:30 AM eastern time.

David Hirsch: Oh. I wrote down 5:30 because I am in the central time zone.

Paul Peterangelo: That’s okay. But I have many guys in the group that do come at 5:30 AM because what other great time to start off your day than with Christ? But I actually started a Bible study, I was introduced to it through one of the pastors that said, Hey, maybe you might wanna do this on Genesis. And I did. And I really enjoyed it. And I, for whatever reason, they saw something in me and they asked if I’d be interested in going through training to become an online group leader and I jumped at that. I felt like this is a great calling. So I did and I started my own group. And last year we were only about eight guys that met every week. So this year’s group for my BSF, I have 22 men in it. And they are from all over the world. They are, I have men from Japan, from Taiwan, from Africa, from India, from the UK and then a lot of them from the United States.

Paul Peterangelo: And it is just refreshing to me to not only be able to do this study, but to do it with other believers. It just it just gives me a kickstart for that whole day sometime, all the stuff I do. It’s like when they play Mario Cart, we, if you’re familiar with that game as you go, there’s as you’re driving along, all of a sudden you see a thing that makes your car go faster. And you try and aim for those to get the speed. So I figure, okay, so I go to Church…voom! I’m going, and then as you’re starting to peter off, all of a sudden, oh, I got my Bible study… voom! And then the next day it’s oh, I got another group at the Chapel… voom! And it keeps zooming you up and it just keeps inspiring you and it’s just infectious.

Paul Peterangelo: It just really lightens my day and it just passes it on to, it doesn’t matter what problems you have. Because you’ve got this, and that’s again, that’s a good message for people with special needs. You’ve got this. Don’t look at this as a negative, as we’ve talked about many times throughout this conversation, and I know you said, Hey, we gotta talk about this negative, but there are so many more positives that totally outweigh those negatives.

Paul Peterangelo: And I, I would just encourage people to look at those negatives and not get bogged down by the minutia of the things that you can’t control. Sometimes it comes down to humbling yourself and getting rid of the pride, because sometimes that causes us to be embarrassed by the kids. It’s not so much that we’re embarrassed by our child, but how people will perceive them.

Paul Peterangelo: Too bad. You know what? They don’t perceive themselves like that. They perceive themselves as who they are and that’s what we should support.

David Hirsch: Yeah. Very profound. Thank you for sharing. So I’m thinking about advice now and I’m wondering what type of advice you can offer a young parent or specifically a dad who finds himself in the shoes of being a special needs father.

Paul Peterangelo: Yeah, I think one of the things with guys, especially as fathers, we like to hold things inside because we wanna be that rock in our family. And I think in all honesty, I know for myself it was a big disservice to my family initially when I did that. You try to act like nothing’s bothering you when inside you’re crying your eyes out and you’re saving your tears for when no one’s around, and then trying to put on the smile and the tough exterior.

Paul Peterangelo: So number one, I think what really helps is getting connected. Again, that’s why, David I just think the Dad To Dad Podcast is just so very important because it’s a resource. It enables mentor, that do find themselves with a special needs child that may not have a way to communicate, to reach out.

Paul Peterangelo: I would always be available to talk to a special needs father that wants to say, Hey, this is what I’m feeling. I don’t know how to say this to my wife or my kids. What do I do? Because again, I think that’s when we isolate ourselves is when we have the struggles and we’ve talked a lot about what special needs is, and most of all, it’s a community.

Paul Peterangelo: And I think you have to be part of that community to successfully navigate everything you’re gonna need, not only for your child, but also for your family.

David Hirsch: Yeah. We’re thrilled to have you as one of the Special Fathers Network mentor fathers, so thank you for being involved. I’m wondering if there’s anything else you’d like to say before we wrap up?

Paul Peterangelo: Yeah. I, again I just wanna thank you so much. David, this has been such an amazing opportunity to be with you today. I am so grateful for that opportunity. I’m certainly praying for you and for your ministry. I hope to become a more integral part of it. I definitely would just, again, as I said, encourage the men out there with special needs.

Paul Peterangelo: It’s one thing to just talk to your wife. But talking to another man who’s gone through it, I think the guidance you can receive is gonna be really supportive of you and really get you through some of the tough humps. And sadly, there are maybe some tough humps early on, and you know that’s okay because you’re gonna come out the other side stronger, but you just gotta weather that storm to get through.

Paul Peterangelo: And just realize that there’s a plan at the end. Like I said, if the story of Amanda ended with my feelings when I found out her diagnosis, it would’ve been a pretty miserable bunch of years, up to 26 years. But again it’s through getting rid of my pride and it didn’t come right away. I gotta tell you. Going to Disney, I remember we had a pass for her, so we didn’t have to wait in lines because she couldn’t, she would just go crazy waiting in lines. We couldn’t control it, so we got a pass. I was embarrassed to use the pass because I didn’t feel like she didn’t… you couldn’t physically see. She could walk onto a ride. So I felt embarrassed. So the very first ride they went on was the Dumbo ride with my family. And I said, you guys go, I’ll take video.

Paul Peterangelo: It sounded like it was a nice gesture, but it was cuz out of my shame. And then after that, something spoke to my heart that said, stop it. You’re missing out opportunities with your family and with your child. You’ve been given a gift by Disney to allow you this, that your daughter can participate. Take it.

Paul Peterangelo: So I had to put that pride away, become humble to that, and we ended up having a phenomenal vacation many times there. And I think that’s just the message. You have to not be afraid to look for the help. You can’t be afraid to accept the help. And I just pray that you will find that help that you need timely.

Paul Peterangelo: And certainly, like I said earlier, if anyone would like to contact me by phone, by Zoom, I’m more than happy to talk to you.

David Hirsch: Yeah. Thank you again for sharing. That story, that Disney story is a palpable one. So let’s give a special shout out to Special Fathers Network Mentor Father Brian Page, coincidentally, podcast interviewee number 19, so 130 or so episodes ago, 230 or so episodes ago, for helping connect us.

Paul Peterangelo: And he is an awesome man and I hope y’all get a chance to listen to his podcast. I’ve listened to it many times about his son Benjamin, and in fact, interestingly, his daughter and mine are both going into law so they, we were able to connect them together.

Paul Peterangelo: Brian, I love you, brother. I hope you hear this and I hope you thought I did a pretty good job on this one.

David Hirsch: [laughing] If somebody wants to learn about the Bible Study Fellowship or contact you, what’s the best way to do that?

Paul Peterangelo: Certainly they can reach out to me. You can have post my phone number if you want to my cell, or they can go directly to Bible Study Fellowship online. And there they can pick a group. They have plenty of groups available for both men and women. My wife’s in one as well. But you can sign up for a time that’s convenient for you. But it’s great study that I’ve never seen one as well prepared or you learn so much. So I certainly would encourage people to participate and I hope you do.

David Hirsch: Yeah, we’ll be sure to include that information and the information about the organizations that you mentioned in the show notes, so it’ll make it as easy as possible for somebody to follow up. Paul, thank you for your time and many insights. As a reminder, Paul’s just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs.

David Hirsch: 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.

David Hirsch: 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. Paul, thanks again.

Paul Peterangelo: Thank you, David. Have a pleasant day.

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.

Tom Couch: Discover more about Horizon Therapeutics at HorizonTherapeutics.com.