Our guest this week is Tony Brescia of West Dundee, IL who owns a Hallmark store, is the father of two including a son with Tuberous Sclerosis, and more recently is raising funds to create Project ALEX Communities, a unique residential community for adults with intellectual disabilities.
Tony and his wife, Joelle, have been married for 34 years and are the proud parents of two boys: Jason (28) and Alex (32) who was born with Tuberous Sclerosis, a rare genetic disease that causes non-cancerous (benign) tumors to grow in the brain and several areas of the body, including the spinal cord, nerves, eyes, lung, heart, kidneys, and skin.
Tony owns the Joelle’s Hallmark Shop in Clarendon Hills. Joelle and Tony also have a vision for building Project ALEX Communities. ALEX stands for Adult, Living EXperience and the mission is “establishing a safe (residential) living environment and create a community atmosphere for adults with intellectual / developmental disabilities and individuals without disabilities.”
We also learn about the role the Tubular Sclerosis Association, Canine Companions for Independence of Greater Chicagoland and Ten Pin Bowlers Special Olympics Bowling have played in Alex’s life.
Tony also talks passionately about the role the SFN Mastermind Group has played in his life and being among a small group of like-minded special needs dads who meet on a weekly basis for fellowship and camaraderie.
It’s a touching and uplifting story about faith and family all on this episode of the SFN Dad to Dad Podcast.
Email – firstname.lastname@example.org
Website – https://projalex.org/
Website – http://www.joelleshallmark.com/
LinkedIn – https://www.linkedin.com/in/tony-brescia-3302875/
Tubular Sclerosis Association – https://tuberous-sclerosis.org/
Canine Companions for Independence – https://canine.org/
SFN Dads Mastermind Group – https://21stcenturydads.org/sfn-mastermind-group/
Tom Couch: [00:00:00] 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.
Tony Brescia: There’s been a lot of God moments, I guess as we look back on them, whether they be teachers who taught him in school who were thinking about retiring but saw him coming up the road and decided not to retire, or talking to a doctor who suggests a surgery that’s radical but it works, or meeting people through Special Olympics that have grown to be great friends over the years and we care about them. It’s not all been negative. A lot of it has been, when you look back, a lot of positives.
Tom Couch: That’s our guest this week, Tony [00:01:00] Brescia, a father, husband, and owner of a Hallmark store in Rolling Meadows, Illinois. Tony and his wife Joelle have two sons, one of whom, Alex, was born with tuberous sclerosis, a rare genetic disease. We’ll hear Tony’s story, including how he and his wife are working to create a unique residential community for adults with disabilities. That’s all on this Special Father’s Network Dad to Dad Podcast. Say hello now to the host of the Dad to Dad Podcast and founder of the Special Fathers Network, 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 [00:02:00] 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 Tony Brescia and David Hirsch.
David Hirsch: I am thrilled to be talking today with my friend, Tony Brescia of West Dundee, Illinois, who owns a Hallmark store, is the father of two, including a son with tuberous sclerosis, and more recently is raising funds to create Project ALEX Communities, a unique residential community for adults with intellectual disabilities. Tony, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Tony Brescia: No problem, David.
David Hirsch: You and your wife, Joelle, have been married for 34 years and are the proud parents of two boys: Jason 28, and Alex 32 who was born with tuberous sclerosis, a rare genetic disease that causes non-cancerous, benign tumors to [00:03:00] grow in the brain and several areas of the body including the spinal cord, nerves, eyes, lung, heart, kidneys, and skin. Let’s start with some background. Where did you grow up? Tell me something about your family.
Tony Brescia: I grew up in Mount Prospect, Illinois, which is a northwest suburb of Chicago. I have one brother who’s three years younger than I am. I grew up with my two folks and a very close-knit Italian family. My grandparents and several aunts lived next door, and so we were all in one space.
David Hirsch: I’m curious to know, what does your dad do for a living?
Tony Brescia: He started out as an auditor for some banks, and that’s where he met my mom. But then he progressed through and went into Human Resources for a photo processing company. While he was there, he took a second job working at a pool and patio store. During that time where he is working both those jobs, he had a friend come to him [00:04:00] and say he had this great idea about creating a direct mail company. So he worked three jobs. But eventually he left the two and worked full-time at the direct mail house, which grew to employing over 500 people and putting together over 2 million pieces of mail a day.
David Hirsch: That sounds like quite a big operation.
Tony Brescia: It was huge. We opened a building that was about the size of a football field.
David Hirsch: So were you and your brother involved with the business at all?
Tony Brescia: We started being involved from a very young age. I remember going in on Saturdays with my dad and we did this one job where we had to put letters in a box and then hot seal them with plastic, but you had to then poke holes in the seal when it came out, otherwise the stuff was gonna blow up. So we had this little push pin, and as the stuff was coming on the conveyor belt, you had to put three holes in it and then put it onto the pallet. That’s where it started. And my dad brought lots of [00:05:00] work home in the beginning if we were behind. And so we’d have an assembly line at home. My grandparents, my mom, a couple aunts, my dad. And we’d hand stuff, envelopes and lick them with little sponges and seal them up. Then we moved into working in the office with them for a while. And while he did interviews to hire people, he’d come out and go, what’d you think of her? What’d you think of him? What’d you think? And then eventually after I graduated college, I went to work for him and worked with the purchasing and the human resources and doing a bunch of stuff. Yeah, I was sort of a jack of all trades with him.
David Hirsch: And did you and your brother actually end up taking over the business after your parents exited, or…?
Tony Brescia: No. Probably about 30 years ago, his partner did a bad takeover kind of a thing. He came in and he ran the company into debt a little bit. My dad wasn’t realizing what was happening, even though he did the accounting stuff. [00:06:00] And he came in and said he was gonna buy him out, and we went through a really terrible time. My dad had a heart attack during that time because of the stress and the strain, and eventually just sold out to him and we as a family moved on.
David Hirsch: So I’m curious to know, how would you describe your relationship with your dad?
Tony Brescia: All over the board. I was younger and he was working so much, we didn’t have a lot of relationship because he’d come home after 9:30, 10 o’clock at night and we’d be in bed. As we progressed, it got way better. We were closer. We did a lot more together. But then we became really close while I was in college. He used to call me and ask me questions on how to deal with my brother. And so after that point we became real close and then as he got older and we worked more together, we were a lot closer.
David Hirsch: Thanks for sharing. I’m wondering, when you think about your dad, is there a takeaway or two, a lesson learned about parenting, being a father, that you’ve tried to incorporate into your own [00:07:00] experience?
Tony Brescia: Even though he wasn’t there we always knew that he loved us. We always knew that he cared about us. We always knew he was trying to build a better life for us. That’s why he worked as much as he did. And I think that really stood out as we were growing up.
David Hirsch: So your dad had a good work ethic. I know that’s perhaps something that he has passed down to you.
Tony Brescia: Yeah.
David Hirsch: And he sounded like he was very family-centric. He spent an increasing amount of time with you and your brother as you each got older. Anything else that comes to mind?
Tony Brescia: Probably the two biggest lessons I think he probably taught me was that your word is your bond. It doesn’t matter what’s on paper. You don’t make a promise, you don’t shake somebody’s hand, you don’t tell ’em you’re gonna do something if you don’t intend on doing it. People might not like the answer and the response if you don’t give them what they want, but you’re being true to [00:08:00] who you are and not promising stuff you shouldn’t promise. And then probably the other takeaway is keep moving forward. Don’t sit and wallow on the bad and don’t over celebrate the good because at some point it might come back and bite you.
David Hirsch: So I’m thinking about other father figures and I’m wondering if there’s any other men that come to mind that played an influential role when you were growing up, or perhaps as a young adult for that matter.
Tony Brescia: I start out with my father-in-law. Joelle and I met when we were in our early twenties. He always accepted me for who I was, always made me feel at home, but always accepted me for who I was always, open armed, welcoming. We didn’t have a problem talking, we didn’t have a problem thinking together and hashing out ideas. He was very much a man of many talents and many thoughts.
David Hirsch: So my recollection was you went to [00:09:00] Aquinas College in Grand Rapids and you took a degree in business administration. You already mentioned that you went to work with your dad out of college. And I’m wondering what was it that helped you with the transition from working call it in the family business to today and for a long time now, owning a Hallmark store?
Tony Brescia: Part of it was necessity. Trying to find something to do when my dad got rid of our company. And I just tried to figure out what I enjoyed doing and where we were at the time. At the time my mom was a mini-collector of statuettes and Precious Moments and whatever, and I was like I wonder if I could do this? So there was a guy near our business that I’d become friendly with who owned a Hallmark store. And I just kinda was talking to him and he introduced me to people who ran the Chicago area. And one thing led to another. Been doing it so long now, I don’t even remember how long, but it’s still fun 90% of the time. [00:10:00] 10% of the time are the frustrations of dealing with the public and them not understanding you don’t print cards in your back room or I don’t have a porcelain factory in the back to make a picture frame or something that we don’t have in stock anymore. [laughing]
David Hirsch: So I’m curious to know how did you and Joelle meet?
Tony Brescia: We met through a young adults group. I had met some young adults at my church who connected up with a group of other churches in Des Plaines and started basically a volleyball Sunday with a bunch of young adults from the Catholic churches in Des Plaines and Mount Prospect. And Joelle had a friend who had a friend that was in the Des Plaines group and she came to volleyball on one Sunday. And at that point I knew we were gonna date even though she didn’t yet. [both chuckling] And then after about three or four dates, I knew I was gonna marry her. She said no the first time I asked her after about a week or two. And I told her I’ll give her 12 times, and if she [00:11:00] doesn’t say “yes” by the 12th, I’m out the door.
David Hirsch: Did you tell her she’s gonna get 12 times or did you think that she was gonna get 12 times?
Tony Brescia: Nope, I told her.
David Hirsch: Okay. [both laughing]
Tony Brescia: And she said yes by I think the sixth or seventh. So it was okay. So we were way ahead of the 12th.
David Hirsch: You had some leeway there. Yeah.
Tony Brescia: I had some leeway. And I didn’t think I was gonna waste a whole lot of my time going past the 12, because if I couldn’t win her over by then, there was no hope.
David Hirsch: Okay. I like your open, transparent way of doing things. [Tony laughs]
Let’s talk about special needs first on a personal basis and then beyond. I’m curious to know, prior to Alex’s situation, did you or Joelle have any connection to the world of disability or special needs?
Tony Brescia: Yeah, I have a cousin that was born with his umbilical cord [00:12:00] wrapped around his neck. He was born when I was in college, so gosh, I think he’s 35 now. He’s a quadriplegic. He is nonverbal. He has also got a seizure disorder As he was a child and growing up and stuff, they’d come visit my grandmother and since they were next door, we’d spend a lot of time together. And when my aunt and uncle would go out, like to dinner or do stuff, I’d go next door and help grandma take care of him. And Joelle just fell into it when we started dating and got engaged that she just started spending time and talking to him and doing stuff. So that was probably our biggest connection.
David Hirsch: Okay. So what is Alex’s diagnosis and how did it come about?
Tony Brescia: His official diagnosis is tuberous sclerosis. We weren’t diagnosed right away. He was born after a normal pregnancy. Everything else was normal. Joelle had a C-section, which wasn’t a big deal. Everything got done, I went home, slept [00:13:00] overnight. She called me probably about 6:30 in the morning saying Alex was having a seizure in the nursery. One of the nurses noticed it and they were gonna airlift him to Children’s Memorial Hospital downtown.
Nobody knew exactly what was happening and what was going on. So I came to the hospital. Joelle and I watched him be carted down the hallway in the incubator. They brought him up to the helicopter and airlifted him to Children’s. I followed soon after. And we spent 17 days at Children’s with them trying to figure out what was happening. And they didn’t know. All they knew was that he was suffering from 75-100 seizures a day.
David Hirsch: Wow.
Tony Brescia: So after about two weeks, and I got Joelle out of the hospital after we went, I was going back and forth for a while. We had a meeting with the doctors there saying, okay, where do we go? And they’re like, oh, we just wanna watch him some more. And [00:14:00] they said they wanted to monitor seizures. I’m like, you know what? Let’s go home. We can monitor the seizures. So we did, and we kinda just survived there for a while. I started therapy right away. We did home therapy, home PT, home OT. Kinda went around with that.
The seizures weren’t stopping with all the medicine that we were on. We would cold turkey one, start another one, bolster, go back and forth. So finally the doctor suggested that we do a hemispherectomy which is a removal of half his brain. But first, they wanted to… Tuberous sclerosis had been bantered around a while but we had no definite diagnosis. So before we looked into the hemispherectomy, we went to University of Chicago where the local expert on tuberous was. And we saw that doctor and we came out of the [00:15:00] appointment saying he didn’t have it. Because at the time there were major and minor markers, there was no genetic testing and he didn’t think he had enough of the markers to be diagnosed with it.
So we went from there and then investigated the hemispherectomy. Went and had that and had half his brain removed when he was 16 months old. His last seizure was the morning of the surgery. We stopped all his medication probably nine months after the surgery and he was seizure-free for 15 years.
Seizures came back during puberty, which led us to investigating more to try to figure out what was happening. So we found a doctor, went back to University of Chicago which is where everybody said we should try, and happened to get hooked up with the doctor there who took the position over of the Tuberous Sclerosis [00:16:00] Clinic. And now there were more diagnostics to see if the kids had ’em. And he did the blood work. And it turns out Alex has a mutation of tuberous and basically he was diagnosed when he was 17.
David Hirsch: Wow.
Tony Brescia: Yeah. So we went a long time without a diagnosis, but sometimes I think that’s better. It was bad in the time, but now that I look back at it, it’s probably better because we had no expectations.
David Hirsch: Yeah. You can only look backwards and come to that realization.
Tony Brescia: Yeah.
David Hirsch: I want to go back to the early days, the first few months. You mentioned that it was suggested that he have a hemispherectomy.
Tony Brescia: Yep.
David Hirsch: And I think you said that’s the removal of part of the brain tissue.
Tony Brescia: Yes.
David Hirsch: That sounds like a very dramatic decision to be making. I’m curious to know if you can put yourself back at that time, what were the conversations you and Joelle were having at that time?
Tony Brescia: Wow. [00:17:00] Yeah, that’s a terrible decision to make at 27 years old, married for two years and trying to figure out what to do. I don’t know if we ever questioned a lot that we shouldn’t do it. It was weird. That was one of those God moments or divine type moments that came our way. While we were trying to figure out what to do and all this stuff was coming up and the hemispherectomy was suggested, my dad, during that same timeframe, had seen a show on channel 11, the local public broadcasting station. Bill Curtis, one of the local newscasters, was doing an interview with Dr. Ben Carson. And he was reviving a surgery called a hemispherectomy to stop seizures. So my dad came to work one day and told me about this, and I’m like, eh, dad, that seems [00:18:00] awfully radical. I don’t know what’s what. A few weeks later, one of our secretary’s cousins went through a hemispherectomy and she was telling me about how wonderful it is and how it stopped those seizures.
During that time, totally different because I hadn’t talked about it with Joelle. She picked up a book, Dr. Ben Carson’s book, about his life and how he was bringing back the hemispherectomy. So it was one of those moments that I don’t think we questioned it a whole lot because all the pieces were going into place and we figured, hey, this is definitely the direction we need to go.
But it was still a very hard decision to make. And in fact, when we went to Johns Hopkins to see what their thoughts were, the neurologist there and Dr. Carson said, yep, I think we need to do this, but we need to bring it to our team first. And a nutritionist on the [00:19:00] team said, I’m not gonna give my blessing until they try the ketogenic diet, which is a diet that could help control seizures.
So when I was talking to the nurse and the doctors during this time, I said, will it help Alex? They’re like, no, it probably won’t help Alex. I said, then why do I have to try it? Because we need the nutritionist’s sign off. I’m like, eh, I’m not so sure that I wanna go through a year and a half of a diet and have these seizures.
So I picked up the phone called the Epilepsy Foundation, and they directed me up to Minnesota Epilepsy Clinic out of St. Paul in Minneapolis. And we went up there and they’re like, yep, we’ll do the hemispherectomy. We’ll go from there. So it just all fell. So it was a hell of a day going through the surgery, but we managed. [laughs]
David Hirsch: And just to timestamp that, how old would Alex have been when that procedure was done?
Tony Brescia: [00:20:00] 16 months old.
David Hirsch: Wow. That sounds like a really heavy decision to be making at any age, let alone 27, like you said.
Tony Brescia: Yeah.
David Hirsch: Okay. I’m trying to put myself back in that point in time again, and I’m wondering what were some of the fears that you and Joelle faced as parents of such a young child with this type of circumstance?
Tony Brescia: I guess it would be the normal fears with any child going through any surgery, What’s gonna happen during anesthesia? Will they come out of it? Will we lose him totally because of the surgery? Will he bleed out? We had to get a bunch of blood donated and shipped to Minnesota because at the time, 30 years ago, there was lots of other problems with blood and you wanted as much as you can to have people you knew give the blood. The surgery was supposed to be like a 7-hour surgery. It wound up being [00:21:00] closer to a 13-hour surgery.
David Hirsch: Oh my.
Tony Brescia: The fears of what’s happening, the fear of God, what happens if the doctor’s too tired? What’s he do? Who can take over if something happens? Your brain goes crazy. But you try to not deal with it and deal with the positive outcome as best you can.
David Hirsch: Yeah. Thanks for sharing. It sounds like a high anxiety experience. Was there any meaningful advice beyond having that procedure done that you can look back on and say, oh yeah, that was really helpful.
Tony Brescia: I don’t remember who told us, but it was pretty much, don’t be afraid to ask questions. Don’t let the doctors “doctor speak” you to death. Ask him to put it in realistic terms. Ask him to tell you so you can understand it. And don’t be afraid to say, okay, what if? Or ask [00:22:00] the questions if you’re not comfortable with an answer or you’re not comfortable signing the paperwork until you get the answers you want. Or cross out the things you don’t want, the CYA for the doctor on there, just cross it out. [laughing] Then if they don’t wanna do the surgery then they’re not the right people for you.
David Hirsch: Yeah. What great advice to be able to speak up or advocate. That’s what I heard you saying. Don’t be intimidated by the doctors or the language that they’re using.
Tony Brescia: Yeah.
David Hirsch: And make sure that you’re comfortable with what’s going on, even if they have to re-explain it or explain it in different terms to make it more understandable. And again, not to focus on the negative but what were some of the bigger challenges that you’ve encountered along the way?
Tony Brescia: In the beginning, after the hemispherectomy, we were home I think for about a month or two and he started getting really sick. And nobody locally quite knew [00:23:00] why. So we went back up to Minnesota. And it turns out he had fluid pooling in the brain. So he had hydrocephalus. So we had to have a shunt put in where it’s basically a valve that pulls the fluid out of the brain and puts it into a stomach.
So we had to go back up there and have that done. But probably within the first year, two years of that, we had to go back in and the shunts didn’t last long for one reason or the other. So we think we had another nine surgeries in those first couple years till we got it done right. So that like halfway through the doctors in Minnesota said, you know what? We’re gonna find you somebody local. So we started going to Northwestern, where one of the doctor’s residents had taken a place. So at least we had some connection back to the doctor.
And then he was good for a long time. And then we’re at Disney World, probably, God, I don’t remember when it was, but all of a [00:24:00] sudden he just passed out in his wheelchair or stroller at the time and nobody knew what it was. So we went back to the hotel and we were there with my folks and my brother and his family, and you know what? We need to get to a hospital. Something’s not right. So I called our doctor here who directed us to Arnold Palmer Children’s Hospital in Orlando. And we went in and we were lucky enough that the neurosurgeon was in the emergency room looking at somebody else.
And so he looked at Alex, checked his shunt and said, oh my God, his pressure is so high. Why is he still alive? So he rushed him into surgery. And this neurosurgeon also happened to be a shunt expert and was working with magnetic timing shunts or whatever so he put one of those in. And since then, knock on wood, we haven’t had a shunt malfunction.
That was rough. It was rough hearing, how can your kid still be [00:25:00] alive? And you weren’t expecting that. Here you were in Disney 10 hours ago and now you’re racing to save a life.
David Hirsch: Wow.
Tony Brescia: And then when he was in high school or coming out of high school, he was on a trip with a local organization and one of the kids that was overseeing it let him go into the bathroom by himself. Now, knowing Alex, he needs help balancing in the bathroom because he’s paralyzed on the one side. But something happened while he was in there by himself because nobody was there. And we’re not sure what he fell into. We think the seat and then the toilet, and then the floor. He wound up with a concussion that lasted about three years, and we totally lost him for a while. He wasn’t talking during that time. He wasn’t doing what he normally did. But after going to visit people at Marianjoy [00:26:00] and talking to them about concussions and talking to doctors who were experts, as best as they could think, is there was such a shock in the brain and with only half a brain, no hemisphere, they think the brain just shifted to the other side, elastic back, and all the nerve endings were stretched out. So we had to wait for them to come back together.
So our life has been fun, but you know what? I guess now when I look back, I’d trade some of it, but not much of it because we’ve met a heck of a lot of people and learned a heck of a lot of stuff because of it.
David Hirsch: Yeah. Thanks for sharing. It sounds like you’ve been on a rollercoaster, not to use the Disney analogy too strongly. But it’s been a journey, an unpredictable journey.
Tony Brescia: Yeah.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast [00:27:00] 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: Were there some turning points that you can look back and say, yeah, we’re in a better place today as a result of this or that?
Tony Brescia: I think so. I think because of Alex I’ve learned more patience. Because of Alex, I’ve learned to accept the little things and appreciate the things that happened. Because of Alex, Joelle and I are closer. Our family has always been there for support and [00:28:00] we’ve always felt the love, but there are times that the love has been greater because of the things we’re going through and the people we’ve met.
There’s been a lot of God moments, I guess as we look back on them, whether they be teachers who taught him in school who were thinking about retiring but saw him coming up the road and decided not to retire, or talking to a doctor who suggests a surgery that’s radical but it works, or meeting people through Special Olympics that have grown to be great friends over the years and we care about them. It’s not all been negative. A lot of it has been, when you look back, a lot of positives.
David Hirsch: Yeah. Thanks for sharing. We do all have the ability to look at the glass, the proverbial glass, if you will, as either being half full or half empty. And I think part of the success that perhaps you’ve experienced is [00:29:00] being positive about it, right? As opposed to dwelling on the negative. And it might be a coping mechanism. It might just be the way you’re wired, your DNA, which is a blessing in itself.
I’m thinking about supporting organizations. You made reference to one: Special Olympics. What role has Special Olympics played and are there any other organizations that have played an important role in either Alex’s life or in the life of the Brescia family?
Tony Brescia: Special Olympics we were lucky enough, the school district that we were in had a Special Olympics team. So when Alex turned eight, the notice came home saying, you wanna try this? So we did. And we tried some track and field events where he did some wheelchair racing, and then assisted running, and tennis ball throws and softball throws. And he moved on to soccer skills and volleyball skills and basketball skills during his whole time there. And we met some really good people. So we had some great times with Special [00:30:00] Olympics.
NWSRA to a certain bit, which is the Special Recreation Association from the northwest suburbs. They were instrumental in the summers when there was no school. He would go to the camps and they would provide aids and help and people there. So that gave us the break during the day where we didn’t have to worry about him.
He started therapy when he was eight weeks old through a local pediatric therapy place that’s run by two women. One of them was a friend of my aunt’s, which I didn’t know. And my cousin started going there when he was born, which I didn’t know until after we got there. So they were instrumental in helping him build up his muscles and move and they weren’t afraid to try different things.
David Hirsch: Yeah. Thanks for sharing. I’m wondering if there’s any other organizations in addition to the Special Olympics that come to mind?
Tony Brescia: [00:31:00] Yeah. I guess a couple that have helped the most is Canine Companions for Independence. Alex has a therapy dog through them. They raise the dogs and train them their first couple years. They match the kids with the dogs or the adults with the dogs based on their needs. They teach you how to train with them and make them work for you. And then they get them publicly certified so you can bring them out to restaurants and stores and whatever
The other one would be the Tuberous Sclerosis Alliance. We’ve gotten some connections through them and learned a few things about what to expect.
David Hirsch: So I’m thinking about experiences beyond your own personal experience or Alex’s experience. And two come to mind. One, you’re a member of the Tuesday evening Special Fathers Network Mastermind group. What was it that inspired you to join and what type of impact has that had?
Tony Brescia: I think what inspired me to join was you, [00:32:00] just our relationship and different things that I know about you and Special Fathers Network and the group that you formed. And I see the passion that you have and I’m like, you know what? I need these guys in my life to a bigger degree. We lost a lot of friends as Alex was growing up because they couldn’t deal with his disabilities. They couldn’t deal with why we couldn’t just pack up and go out to dinner. Why it took us hours to figure out who was gonna sit with him and what to do. And I wanted to share, be around some people who understood that. And that’s why when you announced that you were doing these meetups or these smaller groups on top of the larger scale that I wanted to get involved with them.
And I have to say it’s been wonderful. The guys are great. The experiences are great. You walk away from it feeling not alone. And that’s a good thing when you were feeling alone for so long because your friends just [00:33:00] don’t get it. And you lost a few friends because they truly didn’t get it and they didn’t wanna be around or that was their coping mechanism is to walk away because they were feeling that they couldn’t help.
David Hirsch: If there’s a young dad out there, or maybe even a seasoned dad like yourself, who’s raising a child or children with special needs, and they’re reluctant to raise their hand or to engage with the Mastermind group – which is a weekly commitment, not only of time, but a monthly commitment on a financial basis – what advice would you give ’em?
Tony Brescia: I would tell ’em to give it a try. Come and join us, or join the other group for one meeting. See the interaction, see what’s there, see if it’s right for you. If it’s not, the group might not be right for you, but try to make the connection with somebody there to email, to talk, to be there if you need them. Because we all need somebody who’s gonna understand. And even [00:34:00] though our kids have different problems and our kids are different ages, and we deal with life differently, we understand where you’re at. And I think that’s the biggest thing is you need that.
David Hirsch: Yeah. Thanks for sharing. We’re thrilled to have you. It’s interesting from my perspective, that the age range of the dads is from the late twenties to seventies, different parts of the country, all different types of diagnoses with the kids. You’d think that the youngest dads would be the primary benefactors of this, right? Because they’re able to sort of draft behind the experience of the more seasoned dads. And the feedback I’ve gotten is that even the more seasoned dads, the John Shouses and Rich Gathros of the world, get just as much out of this as the younger dads. So it’s not like it’s a one-way street, right? That any of the older guys are just doing this for the benefit of the younger guys. There’s a lot of engagement and it’s a very uplifting experience. Like I said, thrilled that you’re part of the group.
[00:35:00] Let’s spend a few minutes talking about Project ALEX Communities. What’s the backstory and what’s your vision for that?
Tony Brescia: The backstory all belongs to my wife, Joelle. We were in the car one day and she’s like, what’s gonna happen? Where’s Alex gonna live? Where are we gonna be? And her mind raced to her folks had just moved into a local senior living environment called Friendship Village. And as we’re walking around there, she’s God, there’s a lot of similarities between our kids that are disabled and the seniors. They’ve got different color walls to help them remember how to get to their apartments. They’ve got people who will cook for them and help them out. They’ve got nurses on staff. They’ve still got their independence because they can go on a bus, they can do whatever. And she’s like, you know, I bet this would work if we could put this together for the kids.
So [00:36:00] that became her giant balloon and her giant thought. And over the years we did a feasibility study because we knew it existed and there was a need for this housing, but nobody else did. So we raised funds and did a feasibility study and the guy came back and said, God, there is no place. And it’s like, yeah, we told you that. [David laughing] So he’s like, yeah, this is definitely something that is needed and definitely something that could work.
So we hooked up with Joelle’s brother who had recently retired from DuPont. He has a doctorate in chemistry, so he is very detail oriented and enjoys that work where I don’t. So he started filling out the paperwork and the thought process to become a nonprofit. We formed an advisory board or steering committee to try to figure out where to go next. And the decision was made to move [00:37:00] forward and try to figure out the best way to do it. So we formed the nonprofit. We created a board of directors, but most recently, probably the last six to nine months, we met with a gentleman who has a son that’s autistic, who is a developer of housing and strip centers and stuff who had thought about doing stuff like this.
So we’ve moved forward. We now have the developer. We now have some basic drawings of what we’re gonna look like. Now we’re down to about a 10-acre site. And what’s unique to our thought is we want parents and/or community members, people who are comfortable around our kids, to live in the same area and create a community. A community of people who can allow the parents to go on vacation but feel comfortable that the kids are gonna have somebody there to help them out. A community that’s there if something [00:38:00] happens to the parents. The kids are comfortable and the family’s comfortable leaving their kids there because they formed the connections and there’s people always looking out for each other.
And then a recent addition that we’ve come up with is to have a small retail strip center on the front of the property so that the kids who are capable have a place to work, a place to train, skills to learn, and maybe put in a coffee shop or a pizzeria. Different things to teach the kids things to do.
So we are way further than we were. We’re gonna be starting our capital campaign very shortly to start raising money to buy the land and build the building. We are hoping that we’re not gonna be another 10 years in the making. We’re hoping to get something together in three to five years. But my brother-in-law and all his detail work [00:39:00] have put together a plan and a corporate structure that would allow us to duplicate this anywhere with the corporate structure. So we could just up and move it to the south side or to the city, or to a different state or wherever it needs to go. So after the first one proves itself, we can work from there.
David Hirsch: Yeah. Thanks for sharing. If I can paraphrase what you’ve said, it’s been an evolving vision or process. And at the core of the center what you described is a multi-story residential structure where the individuals, these young adults with intellectual disabilities, would be living. And then around that or nearby would be additional family members, right? So that they’re in proximity and families can look out for one another so they don’t always have to be there 24/7 or 100% of the time.
And I think that’s what makes this project unique, right? It’s not just a residential facility where individuals [00:40:00] with intellectual disabilities might reside because there’s plenty of examples of those. But I think the fact that you’re building in the family component and then perhaps a retail component, makes this quite a bit different than most of what is out there. Yeah. Let’s commit to do this. Let’s circle back a year, a couple years down the road and do a check-in…
Tony Brescia: Sure.
David Hirsch: …to see where Project ALEX Communities is at that point in time. So I’m thinking about advice now, and I’m wondering if there’s any advice that you can offer parents, specifically dads, maybe younger dads for that matter, who find themselves at the beginning of their journey.
Tony Brescia: I guess the best advice or the things that I could say is don’t be afraid. Don’t be afraid to ask questions. Don’t be afraid to try to get the best things you need for your kid. Don’t run away. There’s too many dads who run away from their kids or run away from their families because they can’t deal with not [00:41:00] being able to fix a problem. Don’t be afraid. Everything will work out and be what needs to be and what needs to happen. It just will.
David Hirsch: Yeah. Spoken like a true veteran. Thank you for sharing. So I’m curious to know why have you agreed to be a mentor father as part of the Special Fathers Network?
Tony Brescia: Because I didn’t have one. I tried over the years. And I remember we were at therapy and they were having a parent support group once, and Joelle and I got I think my mom to come and watch Alex. I think he was a couple years old. And we walked into the group and into the room, and it was all women. It was all moms. I was the only dad there. And I got bombarded with the why isn’t my husband here? What are you doing here? Why can’t I get my husband to come? And my answer to them was, I don’t know! [both laughing] That was my best answer. And so I always tried over the years [00:42:00] to try to reach out to dads, whether it be the dads I knew from Special Olympics or the dads that I met through the tuberous sclerosis group and say, let’s go to dinner, let’s talk, let’s do whatever. It just wasn’t there. So then when I heard about your group, it was like, yay! I fit right in here and this is what I’ve been looking for, for 20+ years.
David Hirsch: Yeah. We’re thrilled to have you. Thank you for being part of the Special Fathers Network. If somebody wants to learn more about Project ALEX Communities or contact you, what’s the best way to do that?
Tony Brescia: Our website is projalex.org. We’ve got some stuff on there. Because we haven’t started building yet. We’ve been running programs for the kids every quarter. So you can look back and see what we’ve done and see what’s coming up. You can see what’s there if you want to get involved. And you can probably drop me an email through there. Joelle’s the one who grabs those emails if you wanna [00:43:00] reach out to us and she can pass it on to me and I’ll get back to you through there.
David Hirsch: We’ll be sure to include that in the show notes so it’ll make it as easy as possible for somebody to follow up with you. Tony, thank you for your time and many insights. As a reminder, Tony is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising children with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation 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. Tony, thanks again.
Tony Brescia: Thank you, David.
Tom Couch: And thank you for [00:44:00] 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.” Also, please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, [00:45:00] 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.