194 – Dr. Al Freedman of West Chester, PA, A Psychologist Specializing In Rare Disease & Disability Lost A Son To SMA Recently.

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.

Al Freedman: Because there’s still a baby born with this condition every day, and other rare diseases, we pay it forward. When I would say to each of those people I just mentioned, “How can I ever repay you for taking the time with me? I’m a perfect stranger,” they all said, “Don’t worry, you’ll do the same someday for somebody else.” And that’s exactly what I say to people who ask me how they could possibly thank me for my time. We all look after each other, and we pay it forward.

Tom Couch: That’s our guest this week, Al Freedman. Al is the father of two children, including Jack, who had SMA, or Spinal Muscular Atrophy, a rare neuromuscular disorder.

David Hirsch recorded this interview with Al Freedman in August, 2021, but in October we heard the sad news that Jack had passed away at age 26. So David spoke again with Al this week. We’ll hear the original conversation. Then we’ll hear the follow-up recorded just a few days ago on March 23^rd.

Jack Freedman has shined a positive light on everyone he’s met. We’ll hear about that light, and we’ll feel that light in this Special Fathers Network Dad to Dad Podcast. Say hello now to 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: Now, let’s listen in on this initial conversation between Al Friedman and David Hirsch.

David Hirsch: I am thrilled to be talking today with Dr. Al Freedman of West Chester, Pennsylvania, a father of two, who works as a psychologist specializing in rare disease and disability through Freedman Consulting Services. Al, thank you for taking the time to do a podcast interview for this Special Fathers Network.

Al Freedman: Thank you for having me, David. I’m very honored to be asked.

David Hirsch: You and your ex-wife are the proud parents of two children, Cara, 21, and Jack, 26, who was diagnosed with SMA, or Spinal Muscular Atrophy, a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting.

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

Al Freedman: I’m one of two children. My parents were first generation in the United States. My grandparents immigrated here about a hundred years ago from Russia. I grew up in a suburb of Philadelphia called Cheltenham, Wyncote specifically, home of baseball player Reggie Jackson and former Israeli Prime Minister Benjamin Netanyahu. These are probably the two most well known graduates of the high school I went to in Cheltenham.

So I’m from the Philadelphia area, and I went off to college locally at the University of Pennsylvania. And following college, I became a third grade teacher in a Quaker school. So in my twenties was an educator of young children. I went back to school when I was about 30, to the University of Wisconsin Medicine, where I got a doctorate in counseling psychology and began a different career as a mental health professional.

David Hirsch: Well, thanks for the brief fly-by and reference to your education. And you’re a very humble person, as I’m getting to know you. You overlooked where you got your master’s degree, and I’ll just say that it was at Harvard University.

So, thank you for participating. I’m sort of curious to know a little bit more about your background. And I’m curious to know, what did your dad do for a living?.

Al Freedman: My dad, who is now 93 and still hitting tennis balls, is a retired real estate attorney. I was actually named for his mentor. My name is Albert, because I was expected to follow my dad’s footsteps, I believe, and take a seat in a law firm that his mentor founded. But I went in a different direction and became a third grade teacher in a Quaker school instead.

David Hirsch: Well, I don’t want to say it’s as far away from being an attorney as possible, but it’s obviously a way different career path. And what a blessing it is that your dad’s still alive and active at age 93.

Al Freedman: Yeah, I feel very lucky every day, with both of my parents and my son as well.

David Hirsch: So I’m sort of curious to know, how would you describe your relationship with your dad?

Al Freedman: It’s a wonderful relationship with my dad. My dad is a good guy. He modeled for me how to treat other people, and he modeled for me the proper values. He’s a happy, good guy who has always been there. And I’m now there for him as he’s aging. I’m lucky.

David Hirsch: I’m wondering, when you think about your dad, if there are any important takeaways, lessons learned that you’ve tried to incorporate into your own fathering perhaps.

Al Freedman: I think the most important one is that from a very young age, I observed my dad not only treating Mom and me and my brother well, but he treated everybody well, regardless of age, situation, socioeconomic status or job—everybody he encountered, he treated the same way, with an open heart and respect. And I think that’s probably the most important thing I learned from him.

I have a clear memory of him taking us to his office on Saturday mornings. When he still needed to do some work, he brought me and my brother David with him. And we literally watched him help old ladies across the street in Center City, Philadelphia. We followed him while he held an old woman’s arm and helped her across the street.

That’s a picture of my dad that I have from childhood, and it’s a symbol of what he taught me. Just basic respect for every human being you encounter, and I think that’s served me very well.

David Hirsch: Well, thank you for sharing. I love that visual image of your dad walking an elderly person across the street. It’s almost like the image that comes to mind is a boy scout. You know? Doing the right thing.

Al Freedman: Doing the right thing. And, David, I should tell you, if you haven’t been there, the intersection of Market Street and 12th Street in Center City, Philadelphia, is about two blocks from City Hall and about six lanes of traffic. So it was quite a hike across that six lanes of traffic with that old woman. But it wasn’t just a street, it was a big city street.

And I really respect, thinking back, what my dad was doing in that moment. Because there were all kinds of people in that big city, and he didn’t care who she was. He just saw that she needed help.

David Hirsch: Yeah. That’s fabulous. So I’m thinking about other father influencers, and I’m wondering what, if any, role your grandfathers played, first on your dad’s side and then on your mom’s side.

Al Freedman: Well, my grandfather on my father’s side was named Jack, who my son Jack is named for, who we’ll be talking about. And he lived to about 75. He was a kind and thoughtful and very supportive man. He had Parkinson’s disease and was fragile from when I was a child, but he had a steady, kind presence that I appreciated. 

My mom’s dad lived only to about 67, I believe, and died suddenly of a heart attack. And he was a jovial, happy, cigar smoking grandpa who would take us to the playground. We loved seeing him, because he would always give us a quarter every time we saw him. He was generous. He passed when I was seven, but I always remember Grandpa Pacey being the happy guy who would take us to the playground and always give us a quarter. We always wanted to see him because we knew we’d come away with at least a quarter.

David Hirsch: I love that story about your maternal grandfather. And if my recollection’s accurate, your grandparents were Russian immigrants.

Al Freedman: Correct.

David Hirsch: I’m wondering if there’s any other men who played a father figure role, an influential role in your life, as you were growing up, or perhaps as a young adult yourself.

Al Freedman: Well, I’d say two that I can think of. One was a little league coach named Mr. Steele, who I’m still in touch with. He was my little league coach when I was ten. I so loved that team and the way he led the team. I didn’t know it at the time, but he was modeling for me how to treat kids.

And then a camp director named Harry, who’s still alive and I’m still friends with. I take him out to lunch once in a while. He’s 93 now. He was a camp director at the summer camp I went to. It provided an opportunity for me to be a counselor and to help lead the camp by the time I was 20.

And those two men modeled for me how to treat children with respect, and I carried what they taught me with me when I became a teacher. And now as a psychologist who works with children, they had great influence on me as role models, these two men.

David Hirsch: Yeah. Well, thanks for giving them a shout out. It’s amazing when you look back and connect some of the dots, to see where your values and some important aspects of your character came from. And it’s just great, not only that you can reflect on the influence they had, but while they’re still alive, which is even more amazing.

Al Freedman: Yeah, I think it’s nice for me and for them to stay connected. And they taught me how to have people feel valued as part of a group, how to get the best out of children, how to help children succeed using their strengths, how to have them be team members, how to live together when we were at summer, how to support each other as a member of any kind of group. They were really good at creating conditions that were conducive to healthy self-esteem for kids. And I felt it from them, and I’d like to think I’ve passed it on in my work.

David Hirsch: That’s fabulous. So thinking about getting all the education you have and starting out as a Quaker school teacher, I’m curious to know, how did you make that transition from being a school teacher to doing the work that you are now?

Al Freedman: When I was a teacher, David, I learned a lot. I learned a lot from the children. And one of the things I experienced with some of the children were some very difficult losses that they experienced within their own families. I learned pretty quickly how to teach cursive handwriting and help kids learn their multiplication tables in third grade and second grade. That was the easy part.

But I had I think three children in my classroom years, in my twenties, who actually lost parents suddenly to illnesses when I was a teacher. I watched the pain these children experienced in their families, and it led me to go back to school to continue working with kids and families, to support people who experienced challenges.

So those situations drew me to go back to school to become a counseling professional. Rather than teach multiplication tables to 25 kids at a time, I’m now working with families who face significant challenges one at a time.

David Hirsch: Yeah. Well, thanks for sharing. It’s a little bit more obvious now. So my recollection was that you were married to your first wife for about 20 years, and that she was a special ed teacher. I’m wondering if there’s anything you can add to the experience that you both had raising these two children you have.

Al Freedman: Well, sure. The unusual…well, I guess we have two unusual children. My daughter Cara, who’s 21 and a college senior, was adopted as an infant from Korea in the year 2000. And she followed our biological son, Jack, who was born in 1995 and who was diagnosed at the age of six months with a rare neuromuscular disease called Spinal Muscular Atrophy, which at the time had no treatments available—no cure now, and no treatments then.

We were surprised and shocked by this diagnosis, which came out of nowhere,  because Jack was born healthy. But at the age of six months, when he went to his pediatric check-in appointment, he wasn’t sitting up and rolling over the way most babies are do. And the pediatrician recommended that we have an evaluation by a pediatric neurologist.

Four days later he informed us Jack had spinal muscular atrophy, called SMA, and would likely live only a year from that time. So Anne, my ex-wife, and I were faced with the very painful reality that we wouldn’t have our baby very long. And we left the hospital with Jack and took him home, thinking we would have him for about a year.

And he’s still here. He is 26, and it’s been a long road being his parents. Anne and I still co-parent, and need to very closely, given the complexity of Jack’s medical needs. Jack uses a wheelchair. He breathes with the help of a ventilator. He has nutrition through a feeding tube. He has nurses taking care of him 24 hours a day.

He’s smart, and he’s happy, and he’s motivated, and he drives that chair, and he’s got 3000 Facebook friends and a couple of part-time jobs. He types 20 words a minute with his left eye as the mouse, because he can’t move a mouse. He’s an eye cracker. So he’s a pretty unusual son. But I feel very, very blessed to have him, and I know his mom does too.

Our marriage didn’t sustain itself over time, but our parenting of our son does and has sustained itself. I’m actually where I’m right now, I’m at the house where Jack lives with his mom. I’m here half the days of the week, and he’s taking a nap right now. I’ve been with him all day.

So I’ve been immersed in this parenting experience for a long time now and feel very, very blessed to have every challenge we have, given the starting point we had. And my daughter is off just this week for a couple days ago for her senior year of college, and I’m very proud of her too. And she’s accomplished a lot.

And it’s not been easy for her, being adopted, having parents who are divorced, having a brother who has such complicated needs, and living in a medical circus in and out of the house all the time. And she’s going to be an RA in her senior year and captain of the tennis team. She has her own space to be who she is away from all of the unusual excitement of her brother’s life.

David Hirsch: Well, you have a very eloquent way of piecing the puzzle together, like you’ve just described. And I’m going to go back to one of the things you mentioned about when Jack was first diagnosed 25 years ago, and that his life expectancy was estimated to be a year. It just seems like it would be overwhelming to get that news, and the fear anybody would have that their child might not live very long at all.

And I’m wondering if you could take yourself back there and reflect on what else was going through your mind at that time.

Al Freedman: Thank you. It’s a long time ago. I know a lot of families like mine who have this kind of experience, because I work now closely with rare disease organizations and efficacy groups. When I’m in front of a group of families who have a newly diagnosed baby, the looks in their eyes always bring me right back to November 7th, 1995.

It was election day when Jack was diagnosed, and what I remember about that day was people were lined up to vote. I remember thinking, “Now, how could they all be just going about their regular business and voting? How could the normal world be going on when ours just ended, essentially?”

It was a surreal experience, like being launched into a twilight zone where nobody else was. It was very isolating and scary and disorienting. Afterward, I felt very disoriented and in shock with this news. And so it took me a few days, if not a few weeks, to reorient to this parenting experience, which should so drastically change from having our healthy first baby to one who wasn’t going to live very long.

And now in my professional work, I work closely with many families who experience some version of this, and I train professionals who support families who experience this. It’s a trauma. So what I am describing essentially was my version of a psychological trauma that everyone experiences a little differently.

I’ll tell you that in those couple of weeks after Jack’s diagnosis, I was afraid that something else bad could happen. I was driving 40 miles an hour and on the right lane of the highway, sure that I’d get in an accident. I was afraid in the winter to light the fireplace in the house we were living in, assuming I’d burn the house down. I was just waiting for the next bad thing to happen.

My mind sort of played tricks on me. So it’s like, if your healthy baby is going to die in a year, all of a sudden, then anything can happen. It was that “anything can happen” feeling. When 911 came, Jack was in the hospital with a spinal fusion. He was six years old. Six days after 911. And I remember watching the news and getting a sense that the whole country had experienced some version of what we experienced when Jack was diagnosed.

It was this feeling like nothing is safe anymore—I guess is the best way to put it. And the disorientation that accompanies that feeling is what I recall so clearly. And it’s 26 years later now, but it doesn’t take much to retrieve how that feels, even without the professional experience I have, interacting with so many others who experience this.

It’s a very primal feeling and unusual feeling, and it humbles you and brings you perspective very quickly on what’s important and what’s not important. I’m not the guy who yells at the person at the airline ticket counter when my plane’s late. Like, that’s not a problem. Everyone else’s big problems get smaller really fast, when they see Jack driving his wheelchair by. It brings you perspective.

David Hirsch: Yeah. Well it’s an important point, and given the work that you do and not just the experience you described from your own personal perspective, is a daily reminder that you don’t want to take things for granted. There’s a sense of priorities that you are able to maintain.

Al Freedman: Yeah. And David, also there’s a daily reminder, every time I’m with Jack, I’m reminded of how fragile he is, and when there is not a nurse to take care of him, I’m the nurse. So he could live another day, or he could outlive me, and I’ve learned how to live with that uncertainty for all these years.

But it doesn’t go away. He needs a ventilator to breathe, and if he gets sick, if he got covid, if the ventilator stops working, if there’s an accident, kids like mine perish abruptly, unfortunately, and randomly, because it’s a fragile existence. So it doesn’t take much to remind me of our daily reality. I’m just so blessed every day that he’s doing as well as he is. And he’s doing well now.

David Hirsch: That’s fabulous. Was there some meaningful advice that you and Anne got early on that helped you make some of these adjustments? Anything that you can pinpoint looking backwards?

Al Freedman: Well, one very clear memory was calling the support group. Our group was called Families of SMA. Now it’s called Cure SMA. It’s now a very large organization, but back then it was a small mom and pop operation, with all volunteers. The mom who founded the organization picked up my phone call. I actually called from a payphone at a mall. We were four days after diagnosis. I don’t know why we were in a mall. There were still pay phones. It’s before cell phones were common.

Audrey is her name, and we’re still friends with Audrey. She has a son with SMA. She said to me during that phone call that Jack was a gift. “Your baby is a gift, Al.” And I was confused by, that because I’d heard four days before that Jack wouldn’t live until his second birthday.

So Audrey lit a bit of a flame inside me when she said he was a gift and explained why. And a nurse in a follow-up appointment looked at Jack and said, “He looks pretty good.” And then I was on the phone with a parent who had a kid like baby Jack, who was five years old, who had been told the same thing, and the child was alive.

So there were this little glimmers that came early on that helped me to move from a place of despair to a place of hope. And then Jack himself, he’s smiling all the time and happy, and he didn’t really know what was going on. He was too little to understand. He just wanted to get on with his life and have his bottle and go in his stroller rides, and he would just be laughing and smiling. So he kind of taught me how to be his dad pretty quickly as well. So there was a combination of influences that were helpful.

And then at a later point, not much later, I met a few adults, talked on the phone, and then met a couple of adults who had this condition. It’s a spectrum disorder, meaning you can have a more severe version of it, as Jack does, or a less severe version. And the life expectancy for folks less severely affected with SMA was longer, but I had the privilege of knowing a couple of adults with SMA who told me what their parents had done or not done to support them.

And one woman in particular I’ll always remember. Her name was June. She lived into her sixties, I believe. She wrote a letter to us SMA parents who had newly diagnosed babies, and she told the story of her dad and mom being told that she wasn’t going to live until two. And then when she was two, they told her parents she wouldn’t live until five. And when she was five, she wouldn’t live till ten.

And she said, my dad was waiting. He just waited for me to die. He expected me to die. He listened to what the doctor said. And now I’m 52 years old, and I have a partner and I have an apartment, and I have a job. I have a productive life. And my dad’s been gone for 20 years. Please don’t do what my dad did. Have hope for your child and your child’s future.

And I think she had the strongest influence on me early on as a role model and as a support person. And ironically, you know, everybody else calls Dr. Al for support and counsel. Well, Dr. Al for years called June. June Price was who I called for a pep talk, because she would help ground me and straighten me out as a dad. I needed support from a woman who used a wheelchair and had SMA, and I’ll always be grateful for that connection.

So all these people that I’m mentioning that crossed my path early on had great influence on how I responded to this very difficult situation. And I like to think that I’m trying to pass that on to others in the work that I do, from what I learned from these folks who influenced me. Because there’s a baby born with this condition still every day, and with other rare diseases, and so we pay it forward.

When I would say to each of those people I just mentioned, “How can I ever repay you for taking the time with me? I’m a perfect stranger,” they all said, “Don’t worry, you’ll do the same someday for somebody else.” And that’s exactly what I say to people who ask me how they could possibly thank me for my time. We all look after each other, and we pay it forward.

David Hirsch: Yeah. Well, thanks for sharing. You know, in some cases those people that cross your path in some way or another are the angels that show up in our lives. Right? And maybe you recognize them, maybe you don’t. But you can look backwards and realize what influence their presence has had, small or large, like you were just describing.

And I think part of it is when you get a diagnosis from the experts, it’s devastating. And then you see things that sort of go against the advice you just got, like the life expectancy like you were describing. And to see people that are five years older, ten years older, or adults, all of a sudden, hopefully your mind gravitates to, “Well, there’s a possibility that things are going to get better, or the diagnosis is not going to be accurate.”

And I think your point about not living waiting for somebody to pass away, but living the life to the fullest, is a really important aspect of what you’re talking about as well.

And not to focus on the negative, but what have been some of the biggest challenges for you?

Al Freedman: Well, I’d say, first, the most difficult and painful one was the early reorientation as a parent to the experience that we were expecting to lose the child, and it was very painful waiting for the diagnosis and hearing “neuromuscular disease.”

I heard neuromuscular disease, and I thought MDA. Jerry Lewis’s muscular dystrophy telethon was my only context. And I had this painful lump in my throat, like I could never imagine being the dad of one of Jerry’s kids. Like I didn’t know if I could do that. I questioned whether I could handle it. That was very painful.

And I’m almost embarrassed to admit it, but I think a part of me was relieved when they said Jack wouldn’t live a year, because then I wouldn’t be burdened with the responsibility of Jack as one of Jerry’s kids. It was overwhelming and scary. So to answer your question, that was the first and most painful adjustment, that reorientation to this new life we would be living and the new parenting experience we’d have that we didn’t expect.

And then came a lot of hospital time. Jack was very sick multiple times, had multiple intensive care unit hospitalizations from when he was a year and a half or two through his childhood. I lost track, maybe 300 nights, ten or fifteen rides in an ambulance to the emergency room, and week-long, two-weeks-long, month-long hospitalizations.

It’s a very hard way to live. You don’t sleep much. You’re worried that your child’s not going to live through the illness. You’re dealing with multiple wonderful people who are taking care of him, but changing shifts every 12 hours or every eight hours. It’s an exhausting and stressful experience. That’s a major challenge that we’ve endured.

And thankfully not for five years. Jack got a tracheotomy six years ago, and the ventilator of the trach has stabilized him. So we’ve not been in the hospital since. But that’s been a really hard decision. To go with the trach was very hard.

And having enough people to help take care of him is very hard. Mom and Dad can’t do this alone. It’s too big a job, and we have to rely on open-hearted nurses who don’t make a lot of money and who work by themselves. Nurse Marie right now is with Jack about 50 feet from me while he’s taking a nap. And Nurse Athena will be here at seven o’clock to be here for 12 hours overnight.

They’re wonderful people, and we’re so lucky to have every one of them, but there are not enough nurses, and they’re not paid enough. They’re not supported enough, and there are not enough of them. So it’s very difficult to assemble a team of people to care for your child. Even with the funding that’s available through Medicaid—we don’t have to pay for that care—but it’s hard to have the people and maintain the team. That’s my current challenge.

And I could go on and on, but those are three examples of things along the way that we faced. There are so many others. The modification of the house, and a wheelchair, accessible van, and school for all the years, and whether to go or not, and exposure to other people’s illnesses, and now covid, wheelchair repairs and medical equipment and supplies—the list goes on and on.

But every problem is a good problem, when your starting point is your baby’s only going to live for a year. So I have no complaints. I have only gratitude for this experience and for how long Jack’s been with us and what he has contributed with his gifts that I now understand better than I did when Audrey confused me with that statement when he was diagnosed.

David Hirsch: Yeah. Well, thank you for sharing. Very insightful. I’m sort of curious to know what impact Jack’s situation has had on Cara, his younger sister, or your extended family.

Al Freedman: Well, the closer you are to the action, the more affected you are by the action. So Cara has been more affected than other family members outside of that house.

It’s a mixed bag, and I work with lots of families who have these situations. And with families who don’t have medical situations, being a sibling is a complicated love-hate relationship for many when you’re children. And Cara loves her brother. She worries about her brother, respects her brother.

But also as a sibling for her childhood, Mom and Dad always had to be with Jack. You can’t take your eyes off of him. So there always had to be hands on Jack. Cara sometimes needed to share her parents’ attention in inequitable ways. And that’s true for many families who have kids with disabilities and rare diseases.

So part of her, I believe, has been sometimes resentful of the lack of attention when we were forced to have our hands on Jack, go to the hospital. And part of her respects and loves Jack and what it means to be his sister. And part of her is very independent and self-sufficient, because she learned how to be. And she’s very open-hearted and compassionate and accepting of other people’s differences because of her brother’s differences.

But at the same time, when you’re in seventh grade, eighth grade, you don’t want to necessarily have your friends see your brother’s handicapped van at the football game, right? So I learned to respect Cara’s needs as a child, as a little girl, and then as a young woman and still try to do that. It’s a complicated experience.

She’s the first one that goes on the plane with me to the conferences and volunteers in the childcare room. She’s a gift to the little girls who have SMA in wheelchairs, and she’s beautiful with them. She never misses a conference. She has to be there. So she’s learned a lot, and she’s seen a lot, and I’m very proud of her.

Extended family? I think for extended family in a situation like this, people need direction on how to help. They’re kind of freaked out by the diagnosis, understandably, and family and friends at a distance, they don’t know what to do at first. The risk is they’ll stand back because they don’t want to do the wrong thing, and then you’re more isolated.

So I learned pretty quickly that we need to give direction to people in our friend group and our extended family, essentially to treat us the way they always have. “We need you to come meet Jack and get to know him. He’s a great little baby. And here’s how you can help us,” with permission and directions. Everybody wants to help. They’re hungry to help, but they don’t know how, because it’s such an overwhelming piece of news to hear.

And with our permission and guidance on how to help, everybody has helped.  Jack feels very loved and supported and included by his family on both sides. Generally, people come to Jack instead of Jack traveling to them, because it’s impossible to travel distances with Jack and a nurse and a ventilator and all the equipment. Family members have come to him much more as the years have passed, and he feels very supported.

And now with Zoom and all the technology, he’s talking to everybody all the time. It’s a beautiful thing. He’s got the Facebook, and the Zoom’s going now too. He hosts zooms with his family and initiates that contact himself.

David Hirsch: Man, that’s fabulous. Thank you for sharing. I’m thinking about supporting organizations, and you’ve made reference to at least one, the Cure SMA, which I know has played a essential role in your family’s life. I’m wondering if there are any others.

Al Freedman: I think Cure SMA in our case has been the primary source of support. It’s such an unusual condition, and when you’re in the Twilight Zone, all of a sudden you’re looking for people who understand your version of the Twilight Zone. So that’s been our primary source of support.

The Muscular Dystrophy Association also supports people with spinal muscular atrophy, and they’ve been supportive and helpful in different ways. The Make-A-Wish Foundation gave Jack his first computer. He didn’t want a trip to Disney. He wanted a computer. And that’s what he got when he was like three or four. He got his first computer from them. They were a real gift at the time because we were short on money, and they made everything easy when everything else was hard.

And there have been others along the way, but I’d say those are the ones that come to mind, along with the people at DuPont Hospital for Children. That’s a different type of organization, but that group became sort of an extended family for us, because we spent so much time there, and they were so much a part of Jack’s life as well. So those would be among the groups. But Cure SMA is truly extended family to us and has been for a long time.

David Hirsch: Excellent. Well, we’ll try to include information about these organizations in the show notes just so there’s some other data points that people can tap into.

So I’d like to talk about the work that you do, which obviously is influenced to a great extent based on your own personal experience. I’m wondering what your typical day is, or your typical client is, if you could give our listeners some insight on that.

Al Freedman: Yeah, well thank you. That’s a bit of a trick question now because of covid. My typical day is…like, there are no typical days now. I’m working from home, and where I used to get on an airplane and give a talk, or do a consultation with a healthcare organization or a pharmaceutical company, or a speech at a conference, those haven’t happened.

Those used to happen, and then I’d come home and see patients in my office, in my private practice locally. With covid and with the changes in how technology is used, I’m moving. My typical day includes a wide range of activities, from working with children and adults and families through my private practice, which is outside of Philadelphia, but because of covid now, my geographic availability is broadened.

So I’m seeing people from all over the country and doing some consultations globally as well. So my typical day can include everything from working with an eight-year-old and his parents who have ADD and live in my neighborhood, to working with a family in Australia or Sweden who have a newly diagnosed child with a rare disease, and I’m asked to provide consultation to the family, or to the professionals who are working with the family, to help them.

My typical day can include consultations with executives in pharmaceutical companies who are working to get treatments to families who have babies and children and adults with rare diseases. So I feel lucky to have so many different types of opportunities,

And I guess a bit of a silver lining with covid is the technology which allowed for activity without getting on an airplane, and enabled that in such a way that I’ve been offered new opportunities during this period of time that I had before, but there are many more of them now that are accessible because of technology.

And I’m also grateful for that because obviously having Jack, I don’t like to be far away for very long. And so for me to leave, I need to not only have one nurse, I need to make sure there’s a backup nurse, and I do sometimes arrange that. But it’s nice to be able to be close to home and still help around the world without getting on an airplane.

David Hirsch: Yeah, well thanks for sharing. The technology really has erased the distance in some cases. The world’s a much smaller place as a result.

So I’m thinking about advice now, and I’m wondering if there’s some advice that you can offer, not specific advice, because that’s usually case specific, but advice that you might be able to offer generally to a father who has recently received a diagnosis, or is in the heat of battle, if you will, years into it, that might offer some clarity.

Al Freedman: I guess my bottom line message would be never give up, and that your child’s life can have meaning. And not only meaning, but very profound and deep meaning, not only for you and your family, but for everybody whose paths they cross. That would be my bottom line advice.

And you know, really to finish up, I’ll circle back to what Audrey said 26 years ago. I didn’t know what she meant when she said my baby was a gift. I was confused by that, because we were told our baby wouldn’t be here very long. But now I understand. It took me a lot of years to figure this out. But Jack is a gift, and my message is your child is a gift too.

Jack has a way of bringing out the best in everybody whose path he crosses. He has a way of making everybody’s big problems get small without saying a word. How many people do you know who can walk into a room—he drives his chair into his room without saying a word—who have that impact on people? Everybody’s perspective changes. Your problems get small really fast.

My child has a gift of drawing very compassionate, open-hearted people to him. He’s a magnet for really good people. Not many people have that gift. And so the way I see it all these years later—and I can go on, there are more, but these are unusual gifts that most people don’t have.

And there are a lot of things that are harder for Jack, and there are a lot of challenges that we’ve overcome and that he continues to face. But there are many gifts that he contributes to the world as well. He has an impact on people that’s profound. And I’ve been told by half a dozen people at least that Jack’s helped them through covid because he’s posting on Facebook, he’s happy, and he’s going places and doing things, and he’s positive.

And the perspective that he’s offered other people is impactful, and I can feel it. People are now announcing that to me, because of the stresses and strain of covid. So my message is, “Don’t give up, never give up, and know that your child’s life has meaning, and will have meaning, and it can be very profound meaning.” I hope that’s helpful, David, and I’m grateful to Audrey for introducing me to that idea, even though I didn’t understand it at the time.

David Hirsch: Well, it sound like Audrey gets credit for planting the seed that may have taken a while to germinate, but it seems to be flourishing, so thank you for sharing.

Well, we’re thrilled to have you as one of the mentor fathers as part of the Special Fathers Network. Let’s also give a special shout out to Effie Parks at “Once Upon a Gene” for helping connect us. If somebody wants to learn more about Freedman Consulting Associates or to contact you, what’s the best way to do that?

Al Freedman: Sure. It’s actually Freedman Counseling Associates officially. The best way to reach me, if you’re interested, is through email: al@freedmancounseling.com. And you can also find me on LinkedIn, and you can find me on Facebook, Albert Freedman. I’m just a regular guy, so feel free to track me down any way that’s easy for you.

David Hirsch: We’ll be sure to include all that in the show notes so it’ll make it as easy as possible for somebody to reach out to you. Al, thank you for taking the time and many insights. As a reminder, Al is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor, father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org. Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501(c)3 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

Al, thanks again.

Al Freedman: Thank you so much for having me, David. It’s been a pleasure.

Tom Couch: And now here’s the follow-up conversation with Al Freedman recorded just a short time ago.

David Hirsch:  Al, thank you for taking the time to speak today. Your podcast interview is airing this week, and the original interview that we did was back in August, 2021. And very sadly, your son Jack passed away at age 26, and it’s been the better part of six months since his passing. And I really appreciate you taking a few minutes to reflect on the impact that Jack’s life has had on you, now that it’s passed.

Al Freedman: Thank you, David. I appreciate you having me back and I look forward to this conversation.

David Hirsch: Well, during the interview, which our listeners have just listened to, you spoke very openly about some of the challenges Jack faced in his life and some of the circumstances that your family has experienced. And during the interview you were very open about how every day has been a gift, because you’re not sure of the future.

And a parent’s worst nightmare is losing a child at whatever age, whether it’s a newborn, or a young adult like Jack, or even as an adult, right? You know, it’s just not the natural order of things to lose a child. And I’m wondering if you can reflect on that.

Al Freedman: Oh, thank you, David. Everybody is different, and as you know, I’m also a practicing psychologist, and I work with many parents who have outlived or will outlive their children for different reasons.

In my own case as a dad, because Jack was diagnosed in 1995 with Spinal Muscular Atrophy, and at the time was given a year to live, emotionally, I believe, I grieved the loss of my son then. It was an odd experience to be told our healthy baby wasn’t healthy and would live for only a year, and it almost felt as though he was taken away from us and then given back to us for a year. And that year turned into two, turned into three, turned into four, and ultimately turned into 25 years beyond what were expected.

So now I look back at the years we had with Jack with much more with gratitude than grief, in my experience. When he was diagnosed, I remember thinking to myself that my job as a dad would be to be able to look back, no matter how long Jack was with us, and know that we made every moment meaningful.

And when I had that feeling, that realization, that kind of discovery about how to be a dad in an impossible situation, I felt a sense of relief that there was some solution to the problem that was available to me.

And now these years later, I’m feeling gratitude because honestly, as a dad, I can look back with no regrets, because not only did we have 25 years beyond what was expected, but we used them really well, and Jack used them really well. And I’m very proud of Jack, and I will continue to be proud of him and proud to be his dad, because he accomplished so much in his life, far beyond what was expected.

David Hirsch: Yeah, well, thanks for sharing. I’m wondering if there’s a highlight or two that you can share that comes to mind, like one of those proudest moments as a dad that comes to mind when you think about Jack.

Al Freedman: Yeah, I’m not sure. I mean, there are so many moments over these years that make me proud. But I think what I’m feeling that makes me proudest is Jack gave a lot of love in his life because he received a lot of love in his life—and those moments added up over 25 years.

Jack had not only the family he was born into, but he acquired a number of families along the way. The family at the hospital that took care of him, that became an extended family. The Pennsylvania event camp where he spent many summers, four nights with other kids who used wheelchairs and ventilators, and he went on the zip line, and up a climbing wall, and participated in a food fight. And that bunch of kids and nurses and doctors became extended family.

The school community called Westtown School in Pennsylvania that employed me as a teacher many years ago, employed Jack at the same age, 22. He felt part of that community. We’re about to have his memorial service at the Quaker meeting house on that campus, another extended family. The school community where Jack attended school and graduated from high school surrounded him with love, and Jack reciprocated.

So those moments, many, many moments with many, many extended family members, where Jack received a lot of love and gave a lot of love, I think is what makes me proud of my son and the impact he made on so many people and so many communities all along the way.

David Hirsch: Yeah, it’s really beautiful. Thank you for sharing. At the risk of focusing on the negative, what do you think you’ll miss most?

Al Freedman: I’ll miss my son’s smile. I miss his positive attitude. I miss   taking him out every Saturday and chasing him around while he’s spinning,  driving his wheelchair high speed through the mall and through the community.

I’ll miss all the people who helped us take care of him, and I’m staying in touch with many of those folks, nurses and medical people. But most of all I miss his positive spirit and the impact he had, because I accompanied him wherever he went, when we went away, when we went out of the house.

I miss the impact he made on others every moment that he was present. He really did have the gift of bringing out the best in everybody and bringing people together. And to give perspective. His presence helped all of us know the difference between a big problem and a small problem. So I’ll miss all those things about Jack. But they’re also still very much with me, and always will be.

David Hirsch: Yeah, well, very well said. While his physical presence will be missed, he’ll always be in your heart and so many other people’s hearts. And I just want to say thank you again, Al, for sharing your story, very sobering as it is, and more importantly for your friendship and for being part of the Special Fathers Network, this dad and dad mentoring program for fathers raising children with special needs. Your perspective is very valuable, and I’m very grateful for your involvement.

Al Freedman: I’m very grateful too, David. As I like to say, Jack taught me  we’re all in this together, whatever “this” is, is this is the way I put it. We’re all in this together, whatever this is. And I appreciate your kindness and your including me in the conversation, and I hope Jack’s life can, through dad as the messenger, be a helpful presence for others along the way. Thank you for what you do.

David Hirsch: Yeah, well thanks again. And maybe that would be the title of a book, “Whatever This Is.”

Al Freedman: There you go.

David Hirsch: Okay. Thanks again. Be well.

Al Freedman: You too. Thank you, David.

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.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.