022 – A premature birth and the complications afterward help Adam Levy launch The Nora Project.
Host David Hirsch talks to special father Adam Levy. Adam is a personal trainer who lives in the Chicago area. He and his wife Lauren are parents of four year old Nora, who has complex medical needs due to a premature birth. It’s a story of tough times for Adam and his family, but like many special parents, they persevered. And as a direct result the Nora Project was formed. It’s a program that teaches students to treat their special needs classmates with empathy and kindness. And it all ends with a custom made video and a red carpet film fest. It’s a great story and we’ll hear it on this Special Fathers Podcast.
Dad To Dad 22 – A premature birth and the complications afterward help Adam Levy launch The Nora Project.
Tom Couch: This is the Special Fathers Network 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 connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.
Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support or if you’re a dad who’d like to offer support, go to 21stcenturydads.org that’s 21stcenturydads.org.
David Hirsch: Hi, I’m David Hirsch.
This is the Special Fathers Network podcast. Stories of fathers helping fathers.
Tom Couch: And I’m Tom Couch. Today, David talks to special father Adam Levy.
Adam Levy: In spite of all the nightmares that were in the beginning of our story, we feel so lucky to be where we are.
Tom Couch: Adam’s a personal trainer who lives in the Chicago area. He and his wife, Lauren, are parents of four year old Nora who has complex medical needs.
Adam Levy: Due to a premature birth. We weren’t allowed to hold her for the. For several weeks because she couldn’t maintain her body temperature. Her skin was so thin and she had so little substance.
Tom Couch: It was a tough time for Adam and his family, but like many special parents, they persevered.
Adam Levy: The best advice I got is just to be present with Nora and to appreciate Nora and each other.
Tom Couch: And as a direct result, the Nora project was formed. It’s a program that teaches students to treat their special needs, classmates with empathy and kindness. It’s really fun to meet people who are different than a smile.
You can still be friends with them no matter how different they are, and it all ends with a custom made video and a red carpet film Fest. Taking. Photos and videos of Tommy. He loves the pair of shoes and he loves to go under it and face by. It’s an amazing story and we’ll hear it on this Special Father’s Network podcast.
Here’s your host, David Hirsch.
David Hirsch: Being a father is very important to me. Being a good father means being a successful role model for your child, helping them be happier, more fulfilled. And productive members of society. I’ve started a number of charitable organizations designed to increase the role of fathers.
One of them, the Special Fathers Network is a dad to dad mentoring program for fathers, raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.
Tom Couch: So let’s listen now to David Hirsch’s conversation with special father Adam Levy.
David Hirsch: I’m thrilled to be talking today with my friend Adam Levy of Chicago, a father of a young daughter, and who has a personal trainer. Adam, thank you for taking the time to do a podcast interview for this Special Father’s Metwork.
Adam Levy: Thank you, David. I’m honored to be here.
David Hirsch: You and your wife, Lauren, are the proud parents of Nora who’s turning four, who has complex medical needs as a result of a very premature birth.
And complications from surgery. Let’s start with some background. Where did you grow up? Tell me something about your family, including your siblings.
Adam Levy: Sure. I grew up in Highland park, Illinois, which is a Northern suburb of Chicago. I have an older brother and a younger brother spaced about four years apart.
We grew up. But pretty close knit family. My father was a commodity trader and immigrant from Israel, and my mother was a travel agent and both my parents were always very present and extremely selfless in their parenting with all three of us boys, we were. Clearly the focus of the family unit.
David Hirsch: So you’re pretty close to your brothers.
Adam Levy: Very close to my brothers. We right now live a mile apart from each other in the city. Oh my gosh. And Lauren and I are taking Nora up to Highland park to return to our roots to get a little more space. So we’re moving or moving. Oh, August.
David Hirsch: Yeah. Congratulations.
Adam Levy: Thank you.
David Hirsch: One of my takeaways, just having you talk about your dad and your brothers is very entrepreneurial family.
Adam Levy: Yes. They’re
David Hirsch: independent thinkers outside the box and coming up with solutions.
Adam Levy: Yeah. There are no limits. You know what the levy boys think is possible. That’s awesome.
David Hirsch: Yeah. So, uh, how would you characterize your relationship with your dad?
Adam Levy: My dad. Would do anything to honor me and honor his kids, and he takes that as his number one closest to heart responsibility.
He is entirely selfless in that regard and has always been that way. Has always tried to honor his parents. And at the same time take care of his kids with whatever their needs or desires may be. He came to the country in 1976 from Israel and he did not speak any English. He started teaching tennis at Lake shore.
Now it’s Lake shore sport and fitness. He just taught up to 80 hours a week, tennis Homeland, which is a lot of hours to be on your feet. Absolutely. And establish relationships that would eventually lead him to commodity trading. And what we understood growing up was it wasn’t about your education, it was about your relationships.
It was about being good, honest person, and taking care of the people that love you and letting the chips fall where they may at that point. But always working to get after where you’re going. One of his biggest lessons is to honor people and respect people and to. Make sure you show your respect to individuals that are, um, that are going out of their way for you or taking care of you.
David Hirsch: That’s awesome. So, um, what role, if any, did your grandpa’s play in your life on your dad’s side
Adam Levy: and then on your mom’s side? My dad’s father lived in Israel. He passed away about 10 years ago. We would see him a couple of times a year and speak over the phone. He was always a very loving grandfather.
I remember everyone saying he was a tough guy and never feeling that way about him. Just always feeling, you know, warm love from him. Okay. My mother’s father, happy. Man, he, he lived in the world that he wanted to live in, regardless of what circumstances were around him in the best way possible. What do you mean by that?
Well, he, he just did what he wanted to do. It was really important for him to swim. It was important for him to eat the way he wanted to eat. It was important for him to drive a convertible to tell his dying day is important for him. To smoke cigarettes, even though he’d had three heart attacks. Oh my gosh.
And he lived such a happy man as a personal trainer and fitness, not myself. You know, I look at those cigarettes and think, Oh dear, but. I respect how much love emanated from poppy and his ability to live in his lane, completely happy and taken care of so many people along the way. It was really infectious.
David Hirsch: That’s awesome.
So were there another father figures growing up, other than your dad and your grandpa’s people that played an instrumental role in your life?
Adam Levy: Yeah. Um, growing up my dad’s. Youngest brother Benny, who’s 20 years younger than my dad, uncle penny, uncle Benny. Yep. He was essentially my oldest brother.
He lived with us growing up and took us to Cubs games and always took care of us. This group of boys and men eventually were really cohesive unit. I think we all saw ourselves that way and still do. That’s awesome.
David Hirsch: So, um, where did you go to school.
Adam Levy: I went to Highland park high school and then I went off to college to Emory university in Atlanta, Georgia.
What’d you study there? I studied finance and marketing.
David Hirsch: And when you graduated, what were you thinking?
Adam Levy: I graduated and I began trading commodities. From home. So I was off the floor and I did that until Lauren and I got married in 2013 so I graduated no fives. That was eight years of commodity trading, trading in the morning and in the afternoon.
I was personal training. Because I really needed some human connection. I also needed some control over the outcome of my effort, and I found trading to have its value, but also not provide me an outlet for exerting myself on the world and, and, you know, seeing the impact there. Okay.
David Hirsch: Awesome. So, um, how did you meet Lauren?
Adam Levy: Lauren and I. I had the biggest crush on Lauren in sixth grade when our grade schools merged into Edgewood middle school, and we became really fast friends and our parents had to get a second phone line because we were clogging up their phones every night, and sometimes we would fall asleep. Talking on the phone to each other, and I remember one morning waking up and Lauren saying, I got to go to ballet. Bye. I’m thinking only Gabby just kind of had, it was a bit an overnight phone sleep over it, so that’s really cool.
David Hirsch: So your families have known each other for a long time?
Adam Levy: We’ve known each other for awhile. Yeah. And I asked Lauren out in seventh grade and she said no, and I was, I was really upset about that, and so we were not friends for the next lots of years.
I was really immature and mean to Lauren, which I regret. But then at our tenure high school reunion. We reconnected and that spark in that understanding, that deep understanding of an individual came rushing right back, and it was like the 12 year old version of me knew exactly what he wanted. Even at 28 years old.
I was really struck by that, and I think Lauren was as well, and it’s taken off ever since. The rest is history. The rest is history.
That’s a fabulous story. Thanks for sharing.
David Hirsch: So let’s talk about the special needs. Community on a personal basis and then beyond before Nora was born, did you or Lauren have any connections to the special needs community?
Adam Levy: Mostly. I would say, uh, a slightly removed respect. You know, we sat on the sidelines to some extent and just wondered how it was that these families and individuals carried on with as much enthusiasm for life as they did. It’s obviously very different being on this end of the spectrum. I have, uh, a great understanding of how that works now, but growing up.
I was really intrigued and mind blown. I have a whole thing, so
David Hirsch: limited, if I can paraphrase.
Adam Levy: Yeah. We volunteered at Misericordia, but we didn’t know too many people intimately in our lives that were parents of, or individuals with special needs. Okay.
David Hirsch: So as I recall, Nora was born at 26 weeks. Weighing just over a pound.
Adam Levy: Yeah.
David Hirsch: Four months later, she required emergency surgery to remove part of her intestine and colon, and then finally discharged from the NICU at seven months weighing about eight pounds. What was the experience like? That was wild. Her premature birth?
Adam Levy: Yeah. Well, the pregnancy had complications from the 12th week and we knew that hormone levels were off.
And the doctors advised us that it may be easier to let Nora pass than it would be to subject her to the full medical force of this day and age. So this is before she was born. This was before she was born. Okay. Every high risk pregnancy
David Hirsch: from the very gut.
Adam Levy: Okay. Every test that we took showed. And everything other than her birth weight was fine.
There was no real explanation. Lauren could feel this little fight or kicking and punching inside of her really early on, and now, you know, now that we know how small she was when she was born, it’s incredible
David Hirsch: that literally just over one pound?
Adam Levy: Yeah, she was one pound three ounces. She fits in the Palm of my hand, and my, my wedding band fit up to her shoulder and it fit over her ankle, up to her knee.
Um, we weren’t allowed to hold her. For the first several weeks because she couldn’t maintain her body temperature. Her skin was so thin and she had so little substance that she would risk losing her body temperature if we took her out of her ice lab.
David Hirsch: She’s a miracle baby.
Adam Levy: She is a miracle baby. So many times over, and I remember being so frightened when we were going into the delivery.
Lauren was really sick. Her blood pressure was really high and there were concerns that she was going to have a seizure. Wow. They were monitoring her really closely, and in the last several days she gained 20 pounds of just water weight, and so she didn’t look like herself. She didn’t feel like herself, and I didn’t know what was going to happen to Lauren, and I certainly didn’t know what was going to happen to this really premature.
Kiddo. I remember going for a walk trying to clear my head and get a little bit of perspective on everything. I just tried to focus on three things coming out of this because I knew I had. No control going into it. And the three things that I asked for was set. Laura and I would make it through this together and that whatever the experience, it wouldn’t bring us apart, but it would, it would bring us closer.
I asked that there’d be something I could take from this experience, no matter how it turned out. I wanted someone, I wanted this to be meaningful. I didn’t want to be a victim of whatever it was that was happening. And, um, I’ve always, I’ve always felt so lucky that I, I have a little bit of my poppy Allen that way that I can find my happy and, um, make jokes and enjoy my life and love people.
And that take myself too seriously. And I, I was concerned that this situation, these next several months or years might impact that. And so one of my, one of my final thoughts before Nora was born was just, just to hold on to myself through the whole process. Very powerful.
David Hirsch: I imagine it brings back some very deep feelings.
Yeah. Put yourself back in that situation. It was only four years
Adam Levy: ago. It was not that long ago. Four years ago. Right. And I remember those thoughts. I mean, my thoughts are so different now in terms of what I focus on. Proud each day, but those thoughts carried me through the first two years of, of Nora’s life.
I didn’t answer your question, I don’t think, but Nora was, was born and as perfect as a severely growth restricted child can be. She was, she was breathing on her own. She did not require ventilation. That’s amazing. She was really incredible. Those little lungs were super powerful. I remember going on a run in the heat of summer.
She was born July 15 2014 and I just again was trying to get some space and I was breathing in this hot air and thinking, I’ve got nothing to complain about. This kid is running a marathon every second of her life, you know, with what it must’ve felt like for her to breathe. At that size, and um, she did remarkably well.
There were some complications with her growth as we went on, but nothing that was altering her path. She was really bright. She was really communicative. And then two days before her incident, the doctor said, congratulations. And they said, what do you mean? And they said, you guys are going home. She’s doing great.
David Hirsch: this is like closer to her delivery date that what would’ve been the
Adam Levy: delivery that about four months. Exactly. Exactly. And two days later, Nora was in Lauren’s arms and something happened inside of Nora. It was a twisting of her intestines. It still remains unexplained, but that’s called a valueless.
And a volvulus. We didn’t know what was happening, but the blood supply throughout her intestines was being cut off and it was dying rapidly her, her intestines. So this happened at three in the afternoon, and by about midnight, the doctors pulled us aside and said, if we don’t perform an emergency bedside surgery on your daughter, she’s going to die.
David Hirsch: Oh my God. So here you’re thinking we’re going home. Just a day, a couple of days away maybe, and then this situation re-ups. Okay.
Adam Levy: And signing those papers to let them do exploratory abdominal surgery was one of the hardest things I’ve ever had to do on a four month old and a four month old. Wow. I just thought this is the last thing anybody wants for their kid.
And she was doing so well and it was holding on to that thought after all she’d been through, but she made it through that surgery. There was another surgery 12 hours later. And then three months later there was a third surgery to put her intestines back together, and soon after that she was released home.
David Hirsch: So that’s the first time that she would have left the hospital
Adam Levy: after seven months. Yeah, seven and a half months.
David Hirsch: I feel like you were living at the hospital at that point.
Adam Levy: We were living at the hospital. We had, yeah, we had the, you know, the senior spots, nor had the senior spot. We had a rotation. And between Lauren, myself, and the nursing team that we had been lucky enough to be teamed up with and to cultivate relationships with.
Nora was a pretty popular kid at that, at that hospital, and it was evident to us that it was time for her to go home. She was getting bored and she needed more. More stimulation she needed to get to the outside world.
David Hirsch: So she goes home at seven months and then what
Adam Levy: transpired, we were home for six weeks and life was as close to what we expected, normal to be having less bowel.
Then she started with digesting. Food was a challenge and growth was a challenge and we got some second opinions. And one of the doctors strongly advised a surgery to place a central line into Nora to help her grow when we did that surgery through unexpected complications, and that resulted in severe.
And global brain damage for Nora, and that really altered Nora’s life more than anything at her past. She was put into a medically induced coma and she started to have seizure after seizure after seizure, which is, which is why they, they had to induce the coma, but in their terms hit the. Reboot button and the computer, the human brain.
So what we would see for the electrical activity during the 10 days that she was in that coma was, um, flatline. Monitor with one blip and that that one blip was brain activity. Oh my God. And they shut her brain down to the point where the electrical activity in her brain looked like a very, very slow heartbeat.
That was incredibly frightening. And those nine weeks at the pediatric intensive care unit, which of course. Was there a second stint in an intensive care unit. Those were the hardest, most complicated, most exhausting and defeating days of of of our lives, nor was eventually released from the hospital.
They were starting to get those seizures under control. She was on nine antiepileptic medications when she came home. Maybe it was seven. And she started to make progress in the first couple of weeks, and then soon after that, right around my birthday in August, she started to regress and we didn’t know what was going on and the epileptologist we were seeing didn’t know what was going on.
And we start a second opinion, and Nora was diagnosed with infantile spasms, which is a particularly debilitating form of epilepsy. It makes the brain’s electrical activity so chaotic that it’s impossible to determine. What kind of stimulation is happening in the world visually. Auditorially sense of smell, touch, taste, and kids that are progressing along.
They stop learning how to sit and they stop learning how to roll over and Nora was having these horrible seizures. Whereas she would scream and shriek for anywhere between five minutes and 60 minutes and there was nothing we could do, but hold her while that was happening.
David Hirsch: And how old is she at this point?
Adam Levy: She was just over a year old. Wow. We had a lot of things to tackle at that time. And it would be another year before Nora smiled again. We lost that beautiful smile for a year. We lost any recognition of who we were and Norris is, we lost eye contact. We lost any, any kind of progress she had made and all that time before.
David Hirsch: Those seem like some pretty dark days
Adam Levy: and they were really dark. And because we had a central line and we couldn’t socialize, she didn’t meet her cousins, so she was. Two years old, we couldn’t be exposed to any kind of, um, germs or bacteria because she was so fragile.
David Hirsch: So was she in the hospital again?
Adam Levy: She was home.
She was, we were running a modified intensive care unit at our house. Um, sleep was hard to come by, but coordinating Norris care with all medications, with her short guide, um, which, which meant that. At the time, she had up to 20 dirty diapers a day, and you know, making sure that that is very separate from the line that connects right into her heart was a major priority for us.
David Hirsch: It seems very intense.
Adam Levy: It was very intense.
David Hirsch: Like you said, not getting a lot of sleep. You have to have this hypervigilance right to be doing everything just right. And it seems like it would be very stressful.
Adam Levy: And then every time she’d wake up, she’d have these screaming seizures when her brain was most vulnerable, I was going between sleep and awake, and there’s nothing we could do.
So I’m thinking about advice. What type of advice did you get early on from the pediatricians or the surgeons that helped you and Lauren cope through the situation?
The best advice I got, which is still the thing I continue to think about all the time, is just to be present with Nora and to appreciate Nora and each other.
The idea that we have some sense of what’s going to happen tomorrow. Or that we should think about where we were yesterday doesn’t do much for appreciating where we are right now and for dealing with where we are right now, nor is epileptologist was into a lot of the Buddhist teachings and certainly imparted on me and my time of most need.
At being present was the best thing I could do for Nora and for myself and for Lauren.
David Hirsch: It’s pretty powerful and it’s a good lesson for all of us to try to put the past behind us and not get too far ahead. I think about it as you don’t prewar your worries.
Adam Levy: Yeah, exactly.
David Hirsch: You can’t, you can’t control the future.
Right. And our minds, I think just because we’re all human sort of. Catalog, all the worst things that can happen, many of which never come true. And the energy that he spent, the time he spent contemplating the future can be unhealthy.
Adam Levy: Completely.
David Hirsch: Not that you shouldn’t plan ahead. You need to be thinking forward, but don’t get, you know, drawn too heavily toward all these different outcomes.
Adam Levy: Yeah, I couldn’t agree more.
David Hirsch: So what were some of the more important decisions that. You and Lauren have made raising a child with special
Adam Levy: needs? No. Lauren and I took some different decisions to get Nora medically under control and um, we were lucky enough to have a medical team in place that believed in us as parents and that we’re willing to think outside of the box in order to help Nora.
Sometimes I think parents of. Kids with special needs or kids with medical complexities are given the choice between a certain terrible outcome and an unknown trial treatment, and it can be really difficult for a medical. Team to advise using something that is unknown, that has risks. And we just looked at that situation and thought, we know what the risk of doing nothing is, or staying the course, and that’s completely unacceptable.
So we have to take some unknown risks to hopefully. Make an impact on Nora’s future. And Lauren is an incredible partner for me and in the best advocate for Nora. And together with her, we were, we were able to make some medical decisions that allowed Nora. To come around for her brain to settle, to get her epilepsy under control, and to allow Nora to roll over and crawl.
And three months ago she started walking and my gosh, you and I discussed what it means to be independent at my dad’s 65th birthday last month. It was really important for him that Nora was there. We, we drove to Highland park from the city and it was a long car ride and Nora was antsy to get her legs moving and it was a small restaurant and about 50 people were there, and I plopped Nora down once we got to the restaurant and she just took off walking kind of like a pinball in a machine where all these giant figures.
Beside her, you would show up and she would turn the corner, which she was so happy and to see her experience the world literally not in my arms, was, uh, I don’t know how to describe how proud I was and how grateful I felt to just watch her. Approach the world all by herself, and that sounds like a surreal experience.
It was surreal. Yeah.
David Hirsch: So what are some of the biggest challenges that you’ve encountered? Not that you haven’t made reference to. Some of them you have to say, whether it’s personal or psychological.
Adam Levy: Yeah. I can think of many. Getting over who my child was going to be or was supposed to be was really difficult and it’s still difficult.
It’s not difficult to appreciate who my child is and all the impact she’s having on the world. But I really wanted to know what that kicking, fighting fetus was going to say to me when she finally emerged out of the NICU. And you know, it was growing big and strong and. I was ready to get my ass kicked by her.
Um, and I do.
David Hirsch: I just took him from where
Adam Levy: I do. Um, but it’s been more babble, a must words and, and she’s really strong, so she, she lays a hand on you. You gotta watch out. That was hard. It’s obviously hard watching people you love and people that you anticipated growing up and raising a family with in tandem.
Um, seeing them experience a world that you envisioned experiencing yourself. It’s hard watching your loved ones be so hurt by the situation that you’re in. Then it’s, it’s really hard to manage Norris care team and Nora’s therapy schedule. Is becoming increasingly more manageable, but it still requires a lot of precision and a lot of effort.
David Hirsch: So what impact has Nora situation had on the rest of your family?
Adam Levy: Oh, man. Well, I mentioned to you that that kid’s cackle is like the most infectious giggle and laugh. That exists and she brings a ton of light. We feel, in spite of all the nightmares that were in the beginning of our story, we feel so lucky to be where we are and be with the kiddo that we have.
I think our family feels the same way. I think everyone sees that. Nor is spirit is the guiding force behind the nonprofit that we started. And she’s the reason that people are going to be seen differently and people are going to treat each other more kindly and look to understand each other’s stories a little bit more than they do today.
David Hirsch: Well, let’s segue into talking about the Nora project and not for profit organization teaching empathy in elementary school classrooms. By. Sparking friendships between students and their peers with disabilities. Tell me something about the normal project and how it came about.
Adam Levy: When we were at the pit, you nor a second intensive care unit stay.
We got the results of her brain image three weeks after the complication with surgery and I was with my brothers and we were watching a bulls game. And we were hoping for good news and expecting good news because her brain image three weeks prior to that was the notes on the, on the scan said it remarkably well-developed normal brain, particularly given the circumstances.
Surrounding her first seven months of life, while all right, this kids, you know, maybe an escape with her brain fully intact. But what we saw on that MRI result was lots of pockets of fluid where there used to be brain diffuse throughout her skull and we understood that she’d lost a lot of. Brain and the doctors were hesitant to come and tell us about it.
So it was about nine o’clock at night when they finally came in and Lauren had to leave the room and she called her best friend and cousin Amanda, and Amanda asked if she could do a fundraiser to help, and Lauren said, that’s not what I’m thinking right now. I would just love for people. So understand that Nora is a hero and to understand what she’s been through, I’m so nervous that she’s not going to have friends.
I just want my daughter to have friends. I could hardly stand. As the doctor showed us what had happened to Norris brain, it was clear from everything he was saying that she would face many medical and developmental challenges. I had to excuse myself from the room. I called my cousin Amanda. My cousin called me sobbing.
She was. Frayed that people wouldn’t see Nora when they looked at her, she was afraid that people would think she was scary or weird or less important than they are, but most of all, she was terrified that Nora wouldn’t have friends. She just kept saying over and over again, I hope Nora has friends. I hope she has friends at a loss.
I asked her what I could do. That’s when she asked me to teach my students about kids like Nora, about the obstacles they face and how they’re different. This don’t define them. She wanted me to help them understand that kids with disabilities and medical challenges have amazing stories, so they’ll see them for the truly special people that they are.
And Amanda took that bit of inspiration and created a year long curriculum to teach her students fifth grade. Students at Glen Grove elementary school and when did you, Illinois about people like Nora and about their journey and how to relate to them. Hi, my name is Patrick. My name is Joelle’s. I’m Delaney.
My name is Henry. My name is grace. My name is Jessica. My name is Damian. My name is Shea. My name is Jocelyn, and
the normal project is important to us because we can’t put ourselves in the other shoes. You can build friendships with kids who have special challenges and understand our differences.
David Hirsch: So how does that curriculum work?
Adam Levy: Lauren would be able to explain this 10 times better than I would. She speaks so brilliantly about our project, but the curriculum is broken out into four different phases, and the students in groups of five or six are paired with.
They’re nor a friend, a child in the community with a disability or a child with special needs, and they learn about that individual’s story, their Nora friend’s story. They prepare to have visits with their nor friend. What kind of. Ways does this person like to interact? What kind of ways do they not like it to interact?
Might they be overstimulated with too much light or too much sound? What kind of environment can we create to make our friend comfortable and connect with our friend? They eventually interview people closest to their nor friends. Therapists, family members, doctors, whoever the family provides, and they gain a larger sense of this individual from their people.
And then in combination with the visits in the interviews, they create a. A documentary. It’s usually about seven minutes long, and that’s the capstone of their project. And the documentary is made by the students. These fourth or fifth or sixth grade students about their Knorr offense. And the footage is remarkable.
If you folly catch Say good morning and you take me though. We choose to be kind of William and treat him like our own friends. William is a special boy and he deserves respect like all of us. It’s really fun just to make people who are different than a smile. I can still be friends with them no matter how different they are.
Oh my God. These are fourth, fifth, and sixth. Getting this type of experience. It’s like
amazing. It’s amazing. Yeah, it is. It is. You’ll be crying and you’ll be feeling so good at the same time, and it’s become clear to us that if you offer a child a platform to do good, they are so excited to do it. And they far exceed any expectations you might have had when you provided that platform.
The day we saw William on his communication device, we had a lot of fun singing and watching him learn. It was cool to see him come here. Indicate in a new way. He will never be scared of anyone or anything cause we, he will always know that we will be there for him.
When I first saw this, I could not, I couldn’t believe what I was seeing and I was so skeptical. I thought, is this, are they putting this on somebody? Like they’re in the background coaching and a video after video. I saw the same. Outcome. The kids were just really excited to meet their nor friends with these people that they’ve been studying.
And these newer friends become sort of celebrities, which is an indirect outcome and an indirect positive result of this project. We wanted to shed light on people that are typically relegated to the shadows whose stories aren’t told about, who may not be able to ever tell their own stories, but it. The kids took it a step further.
They really made them celebrities, and at the end of every school year, we do a red carpet film festival and it’s called Northern night, and it happens in each participating school. In the first year, there was one school. Next year there’s going to be 32 participating schools. 32 yeah.
David Hirsch: Are they all here in the Chicago area?
Adam Levy: Many of them are. There are some in Atlanta. There are some in Michigan. There are some in Maryland, but primarily we are in Chicago. It’s where we can best. Deploy our resources and make sure that this experience is as good as it can be.
David Hirsch: That’s just awesome.
I just love it.
Adam Levy: Thank you.
David Hirsch: We’re going to have to do another interview like two, three years down the road.
Adam Levy: Absolutely. Where this is all absolutely.
David Hirsch: So what role has spirituality played in your life.
Adam Levy: That’s a great question. I don’t consider myself a very religious person in any typical sense. I am very culturally Jewish, which to me means family and friends kept close opening your arms to the world. To try to take care of anybody that, that you may be able to, to serve.
But I’ve found it means to me in this experience, and what I take with me is spirituality to me is community. It is people, whether they are praying or thinking or doing, or just being in your corner, the power of having a community of people directing attention. Either in your, in your direction, in your time of need or your child’s time of need or gathering resources to make sure that you are well fed and cared for when you can’t roll out a bed because your kid’s been in Tacoma for the last eight days.
I found there to be something larger in that, in the power of community.
That’s awesome. So why did you agree to be a mentor father, as part of this special father’s network?
One of the three things that I thought about before Nora was born was creating meaning out of the experience. All of the things that we’ve gone through, if I just tuck them away and didn’t share.
The lessons learned or didn’t embrace the ability to serve another individual or another family with what we have experienced ourselves and what we’ve been given. I don’t think I’d be living that, that one. Ask of myself at that time, which was create meaning out of this experience and the ability to sit down with another individual or get on the phone or provide a text or email support, whatever the situation may be.
Provide so much value to me personally and so much meaning to my experience. I am so honored to be included in this remarkable group of fathers, and I’m so touched that you wanted to meet me and speak with me, and yeah, this is a really big, is a really big thing for me.
David Hirsch: Well, let’s give a shout out to our mutual friend Johnny Zimmerman.
Adam Levy: Yes, absolutely. Introducing us. The mayor. The mayor,
David Hirsch: you might know that, uh, the special fathers network is modeled after implements angels. You know, they have 8,500 cancer survivors. The angels who’ve been matched 35,000 plus times. With cancer providers. So what we’re trying to do is build this group of mentor fathers, right?
It’s at a hundred plus today. Get that up to hundreds, and if it’s meant to be thousands, and then match those dads like yourself with experienced, provide these younger dads who are closer to the very beginning of their journey, uh, raising a special needs child with the thought that they’re not gonna offer medical.
Or legal advice, but they’re going to offer this one-on-one experience. So I’m very thankful for your involvement in this special father’s network. Is there anything else you’d like to say before we wrap up?
Adam Levy: No. I just want to thank you for this opportunity. I am. I’m really excited about the work that you’re doing.
And the work that the special fathers network is doing. And I couldn’t be more honored to be included in this group.
David Hirsch: Right? So if somebody wants information on the Nora project or to contact you. How would they go about doing that?
Adam Levy: Our website is the Noraproject.ngo. If you just Googled Nora project, you’ll find us and there’s an email address that will make its way over to me.
If you mentioned you want to speak to Adam and I encourage you to check it out, it is really powerful stuff. Yeah,
David Hirsch: well, what I’ve learned is it’s very inspiring and you’re off to a great start. Adam. Thank you for taking the time and many insights. As a reminder, Adam is just one of the dads who has agreed to be a mentor father, as part of the Special Fathers Network.
A mentoring program for fathers, raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Adam, thanks again.
Adam Levy: Thank you.
Tom Couch: This 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 fathers to support fathers. Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids.
If you’re a father looking for support. Or if you’re a dad who’d like to offer support, go to 21stcenturydads.org that’s 21stcenturydads.org.
David Hirsch: And thank you for listening to this Special Fathers Network podcast stories of fathers helping fathers.
Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again to find out more about the Special Fathers Network, go to 21stcenturydads.org 21stcenturydads.org.