Our guest this week is Leonard Boston of Kalamazoo, MI, a retired U.S. Navy Chief Petty Officer, real estate agent, board member of Parent To Parent (P2P) USA, and father of four, including a daughter with Angelman Syndrome.
Lenn and his wife, LaTrieva, have been married for 13 years and are the proud parents of four children: Kenyana (31), Ashante (28), Maleek (26) and Chloe(11), who was diagnosed with Angelman Syndrome, a genetic disorder that mainly effects the nervous system.
After serving 20 years in the Navy, Lenn became a real estate agent and also serves on the board of Parent To Parent (P2P) USA, a national non-profit that empowers and supports parents raising
children with special needs.
Lenn is also active on a local level with The Family Center For Children And Youth With Special Health Care Needs, a statewide parent-directed center within Children’s Special Health Care Services and the Michigan Department of Health and Human Services.
It’s an uplifting and inspiring story about a blended family whose young daughter with special needs has inspired them to advocate for greater parental involvement on a local and national basis.
We hear the Boston family story including how they strive to push Chloe to walk and be as strong as she can. That’s all on this Special Fathers Network Dad to Dad Podcast.
FAST (Foundation For Angelman Syndrome Therapeutics) – https://cureangelman.org
Angelman Syndrome Foundation – https://www.angelman.org
Parent To Parent (P2P) USA – https://www.p2pusa.org
Family Center for Children – https://www.michigan.gov/mdhhs/0,5885,7-339-71547_35698-56603–,00.html
Woods Edge Learning Center https://www.kresa.org/woodsedge
Lenn Boston: So I think that the best advice came from my mother. My mother basically said, “She is your child. She is my grandchild, and she is going to be extraordinary. She is a special young lady, but you don’t treat her any more special than you would any other child in your family.” And I think it’s through that lens that allowed my wife and me to say, “Okay, let’s do it that way.”
Tom Couch: That’s our guest this week, Lenn Boston, a real estate agent and board member of Parent To Parent USA. Lenn and his wife LaTrieva are parents to four children, including Chloe, who is Angelman Syndrome. We’ll hear the Boston family story, including how they strive to push Chloe to walk and be as strong as she can.
That’s all on this Special Fathers Network Dad to Dad Podcast. Say hello to our host, David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our Facebook group, please go to facebook.com/groups and search dad to dad.
Tom Couch: And now let’s hear this fascinating conversation between Lenn Boston and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Leonard Boston of Kalamazoo, Michigan, a father of four, a retired US Navy Chief Petty Officer, a real estate agent, and board member of Parent To Parent USA. Lenn, thank you for taking the time to do a podcast interview for this Special Fathers Network.
Lenn Boston: You’re very welcome. It’s my pleasure. Thank you for inviting me to be a part of this.
David Hirsch: You and your wife, LaTrieva, have been married for 13 years and are the proud parents of four children, Kenyana, 31, Ashante, 28, Maleek, 26, and Chloe, 11, who was diagnosed with Angelman Syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family.
Lenn Boston: I grew up in Chicago, Illinois, on the south side. I have two siblings, a younger brother, younger sister, and we grew up as I guess you would say a complete family, the normal nuclear a family—Mom and Dad, two brothers and sisters and myself, cat and dog and the picket fence, I guess you could say.
David Hirsch: I love it. Thank you. So out of curiosity, what did your dad do for a living?
Lenn Boston: My dad started out as a steel worker, a welder. He was very good actually. And then in 1979, he pursued his dream of being a police officer. So his career spanned 32 years before he retired in 2015. And then I guess due to the lack of excitement that he had as a police officer, unfortunately he passed away two years later at the young age of 69 years old.
David Hirsch: Yeah. Well, thanks for sharing. So was he actually a Chicago Police Department police officer then?
Lenn Boston: He actually was a police officer in the town he grew up in, just outside of Chicago, which was Robbins, Illinois. So probably about 20 minutes outside of Chicago, basically where he grew up. He went to school at Eisenhower High School, which is right out there in Blue Island, really close to Robbins, and that’s pretty much where he spent his career as a police officer. He retired as a captain.
David Hirsch: Okay. I imagine he had some interesting stories over that long career.
Lenn Boston: You know, we were always interested in the stories. He worked the night shift, so he would come in about 7:30, 8:00 a.m., and he would share those stories from the previous night. And I can tell you, those were some exciting moments in the morning before he laid it down for the rest of the morning.
David Hirsch: Okay. That’s for another conversation. Thanks for sharing. So when you think about your dad, how would you describe your relationship with him?
Lenn Boston: You know, I guess I have to say he was always there in a sense, but my dad had the mentality that a father was supposed work, work, work. And his job was to pay the bills and provide for the family—and that’s pretty much what he did. He spent most of his time working maybe one or two jobs at any one moment. Even as a police officer, he worked another position where he was a truant officer at a high school.
But with that being said, even though he was working a lot of his time, the time that he was home he spent with us. He was kind of teaching us how to be men, and teaching us the value of work and the value of family and taking care of family—what he considered to be of most importance for the typical man to do, as far as his family was concerned.
David Hirsch: Yeah. Well, I can paraphrase what you’ve said, he had a good work ethic, which is an important role model for all young people, and he was very family-centric. Right? He was present, even though he worked a lot and he was present in your, your brother and your sister’s lives.
Lenn Boston: Absolutely.
David Hirsch: So any important takeaways that you picked up from your dad, that you’ve tried to incorporate into your own parenting?
Lenn Boston: I took what I guess you could call the good and the bad in the way that we were raised. In a sense, I wanted to do things a little bit differently as far as spending so much time out of the house time trying to provide for the family. So my goal was to try and be able to provide for the family in less time throughout the day.
I believed in his work ethic, and I believed in what his intentions were, as far as how to raise a family, but I would have wished that he would have been able to make a little bit more time to be more sociable with the family, to hang out with the family a little bit more.
He did his best. We did different things like amusement parks and picnics and things like that, but they were very scarce. And in my own family, I decided to take that learning opportunity and turn it into a situation where maybe I could do this a little bit differently and spend more time with the family.
Now with that being said, I started my family fairly early. And as a military person, that kind of hindered that plan initially, due to several deployments and always being out to sea. So I was gone quite a bit during the early years of bringing up a family. But as time went on, that kind of tapered down. And then once I retired, you know, that kind of went away completely, and I was able to spend more time with the family.
David Hirsch: Yeah. Well, it’s not lost on me, that you became a father before you were 20 years old.
Lenn Boston: I did, and I can’t say that I wanted that responsibility. But I will say that I cherished that responsibility right away. You know, I was always there. Whether I was on a deployment or anything like that, in a sense I was always there, and I always felt that my family came first no matter what.
So even at the young age, due I guess to the teachings and trainings I received from my father and other members of my family, at that young age I knew that my responsibilities had to set in right then and there.
David Hirsch: That’s fabulous. Thanks for sharing. So I’m sort of curious to know when you graduated from high school, where were you pointing, what were your next steps?
Lenn Boston: So that was pretty interesting. I graduated high school in 1989. I attended Rich Central High School in Olympia Fields, Illinois. I was an honor student, and all my friends were pretty much honor students, even though I lived in I guess a modest neighborhood. But my friends mainly lived in more middle class, upscale, more upper class neighborhoods and things like that. So that was pretty much my friend base.
And we constantly discussed going to college and things like that. I remember I was sitting in my honors science class as a senior six months prior to graduating and having this discussion. I had just told my friends, “I’m going into the military,” and everything just stopped. I had discussed going to college, and we all talked about where we were going, so they were like, “What are you talking about?”
I didn’t really have all of the knowledge as far as funding, financial aid, things like that, in order to go to college. And my parents had basically said they weren’t going to be able to fund college for me. So I guess I got the notion that, “Oh, I guess I can’t go, so now I need to do this on my own.” And I said, “Well, I can get the GI Bill, and I can pay for my own college.”
So that’s why I told everyone I was going into the military. It was a shocker. It was a different career path, but in the end it brought me to the same point in life that several of my friends are at now.
David Hirsch: So you went directly into the Navy from high school then?
Lenn Boston: Yes. And while I was in the Navy, I did University of Illinois during my shore duty times, and when I traveled, I did some distant learning classes and things like that. And ultimately I received my first degree from the University of Phoenix, and then my master’s degree from University of Illinois.
David Hirsch: Excellent. Well, I know the University of Phoenix has played an important role in a lot of individuals’ lives, and a very large number of people in the military, right? They were the 800 pound gorilla back in the day in the for-profit education space, and they had a huge division that was dedicated to serving those in the military, making it as easy as possible, because many individuals like yourselves were on deployments.
And, you know, you were able to sort of do double duty if you will. You were able to continue your education while you were serving. So I know that’s played an instrumental role in a lot of people’s lives.
So when you started college through the military and then when you graduated, I guess you were still in the military, because you spent a little more than 20 years in the Navy, right?
Lenn Boston: Yes. I finally graduated with my bachelor’s degree in 2006.
David Hirsch: Oh wow.
Lenn Boston: It took a very long time, and I realized that with marriage and the military and children—you know, people say it is very difficult to continue your education when you have all those things going on, and I can attest to that. Then certain things in my life occurred, where I’m actually on my second marriage.
So during the first marriage is when I was actually trying to really get my education done. And that kind of put a hamper on some things, slowed some things down a little bit. But with that determination and motivation to complete that and get to a point in life that I wanted to be in, you know, that was my factors to complete that task.
David Hirsch: Yeah, wel,l I admire your stick-to-itiveness. A lot of people think, oh, college is for four years, or some go a little bit longer, maybe a fifth year. But if I got my math right, if you graduated in 1989 from high school and then you graduated from college in 2006, it took about 17 years.
Lenn Boston: Yeah, absolutely. Absolutely. But I will say this. It took 17 years, but at this point I have no student loans. Some of my friends may have gotten their degrees much earlier than I did, but they are still paying on their student loans.
David Hirsch: Yeah, well it’s just a reminder then that there’s more than one way to skin the cat, if you will. And you know you got an extraordinary experience.
You have a child with your first wife, your daughter Kenyana. Then LaTrieva has two children of her own, and then you married, like you said, 13 years ago. And you have a daughter between the two of you who is Chloe. And I’m wondering, thinking about special needs on a personal basis, what is Chloe’s diagnosis? And when and how was that diagnosis made?
Lenn Boston: She has Angelman Syndrome. That means delayed walking abilities, learning disabilities, lack of speech. So basically 99% of those with Angelman Syndrome do not speak.
Angelman syndrome also encompasses two types of situations. In some situations you have deletion positive, which is a deletion of some of the genetic material within the chromosome 15. And then you have what’s known as a mutation of chromosome 15. They present differently as far as the capabilities and abilities. With a mutation, you may get some type of speech. With a deletion, normally none. Maybe a few words or something of that sort. So there are some differences in that. Chloe was diagnosed with deletion, so she’s missing some of the material.
She was diagnosed at the age of one year, due to noticing some delays in her physical abilities, such as crawling, holding her head up, some type of speech pattern, you know, prior to one year of age. And we had a very good nurse practitioner that picked up on this right away and recommended some pathways for us.
Eventually a genetic test was done, because this is the only way that you can determine whether your child has Angelman Syndrome. It has to be done through genetic testing, and that is pretty much how we found out.
It is very rare. It’s one in 15,000. But now it’s being more widely known. It’s gotten a lot of attention here lately, and they’re starting to find out that there are more children or adults with Angelman Syndrome that just were never diagnosed properly.
David Hirsch: If you can remember back to when the diagnosis was made some 13 years ago, or 10 years ago, sorry, what were some of the concerns or fears that you had then, or maybe you still have for that matter?
Lenn Boston: Well, back then—and it doesn’t seem like that long ago—but I have to say “back then,” the knowledge about Angelman Syndrome was still fairly, what I would call archaic. The term used to be related to what they would call Happy Puppet, because they are always smiling, they always seem happy. They always had this personality about themselves that just screamed out laughter and enjoyment. So that’s one of the nicknames they gave to this syndrome.
So when she was diagnosed, the geneticist actually gave us the diagnosis in her office, and she gave us a very blunt, cut-and-dried in a sense, response. “Your child will probably grow up to be very nonresponsive and possibly slightly in a vegetative state, not really understanding what’s going on.” She basically just told us to love her and comfort her and be there for her.
That was very shocking to my wife. I take things a little bit differently, and as a mother, I expected her to respond the way she responded. And I comforted her in that manner. But my whole thing was, I’m not going to raise, or we are not going to raise our child, any differently than we raise the other three.
And our goal was to make sure that we gave her the opportunity to be successful and to have the best quality of life she could possibly have. And that’s what we gave her from day one. And in hindsight, and looking at other parents—I never question anybody about their choices as far as how they raise their children—but I look at our child, and I say we put a lot of effort into making sure that she was raised as typical as we could.
And at this point we think that that helped her, because she’s got very good communication skills. She’s very active, very athletic. You know, she’s done several things up until this point, such as the Special Olympics and running track for two years with them. We continue to try to raise her as we would raise any of our other children, and I think that’s the best thing we could have done for her, considering her diagnosis and her situation. Now she doesn’t speak. But she is very good at communicating.
David Hirsch: Does she use a tablet then to communicate?
Lenn Boston: She uses a tablet. She also uses gestures and hand movements. And for the most part, since she’s getting older and thinks that she’s a preteen, she does a lot of things on her own, such as going in the refrigerator and taking out what she wants, regardless of what we say.
David Hirsch: Well, having raised five children, including three daughters, I’m wondering if you’ve gotten to the eye roll stage yet?
Lenn Boston: Yes, we have gotten to the eye roll and we have gotten to where she’ll cut her eyes a little bit, and give us the look to the side, or whatever. Or sometimes she’ll just go in her room slowly and close her door. I think that’s the worst out of all of the things that she can do to show defiance.
David Hirsch: Okay, well, kids are kids regardless of what their situation is, whether they have a diagnosis or not. And I’m sort of curious to know, was there any meaningful advice that you got early on that sort of put you down the path that you just described?
Lenn Boston: Are you referring to advice about raising a special needs child, or just advice about raising children in general?
David Hirsch: About raising a child with Angelman’s, about raising a child with special needs, or just in general.
Lenn Boston: So I think that the best advice came from my mother. My mother basically said, “She is your child. She is my grandchild, and she is going to be extraordinary. She is a special young lady, but you don’t treat her any more special than you would any other child in your family.” You know, my mother sees her as if nothing plagues her. She is absent of any type of diagnosis, and that’s how she looks at her. And I think it’s through that lens that allowed my wife and me to say, “Okay, let’s do it that way.”
You know, that kind of reinforced the idea that if mom says it, then it’s probably true.
David Hirsch: Yeah, well, it’s really prophetic advice. One of the things I’ve witnessed doing close to 200 of these interviews is that if you compensate for a child’s weakness, however that’s defined, and you do things for them that they might be able to do for themselves, you think you’re doing the right thing or the expeditious thing, right?
You’re in a hurry. Let’s just get this done, as opposed to letting them do something. It could be as simple as tying their own shoes or cleaning up after themselves. You know, something simple, and over time you’re further handicapping your child by not letting them do things. And it’s ironic that a child that might be perceived as having a handicap is even further handicapped because of the actions of their parents.
And what I heard you saying, at least I think I heard you saying, is that you tried to raise Chloe just like your other children. You had the same high expectations and tried to let her pursue as many of those opportunities as possible, and then she’s really the beneficiary in the end.
Lenn Boston: I would just add to that really quickly. One thing is we were allowed to actually have a handicapped placard for her, so we can park close to the stores and things like that. And Chloe was just beginning to walk. She started walking at the age of three. So she was a little delayed in her walking, but she started walking unassisted at the age of three.
And I bring that up because I refused to get the handicap placard, because I wanted her to walk from wherever we parked. So we parked further out in the parking lot to give her the opportunity to build up her strength, build up her legs, because along with Angelman Syndrome, they have a byproduct called ataxia.
And that was one of the diagnoses that she had. It’s the lack of strength and definition in the legs. So with that being said, if we hindered her by parking so close and then putting her in a wheelchair once we get in the store, that’s not going to help her build her legs. So I refused, and to this day I don’t have one for her, because we felt that she needed to walk and build her strength. And I think that that helped her in the end.
David Hirsch: Yeah. Well, thank you for sharing. And for different reasons which I won’t go into, even if I might be entitled to a handicap placard, like you were saying, and I’m 90 or a hundred years old, I am not going to use that. Because I’ll park next to the handicap spot or somewhere close to it. But I am not going to succumb to that.
And that’s not saying, you know, if you’re handicapped, you shouldn’t make use of that. But there’s something that I think is part of my DNA that says, “Hey, I want to challenge myself, right? I want to push myself a little bit further or harder.” I think it’s just a mindset, which I think I heard you say as well, so yeah.
So not to focus on the negative, but just to be authentic, what have been some of the biggest challenges that you and LaTrieva faced raising a child with Angelman’s?
Lenn Boston: Well, it definitely changed our mindset as far as how we were going to live our lives. When LaTrieva and I first married in 2008, we had the mindset that since I was about to retire, we were going to travel and do a lot of things together that involved getting out and seeing other places and doing other things.
And even when we decided to have a child in 2009—so Chloe wasn’t a mistake. We planned to have Chloe. But our mindset was that we’ll just backpack. We’ll take our child with us. We’ll put her in one of those carriers, and we’ll still traipse around the world.
But when her diagnosis came, that pretty much changed that completely forever. So it’s been very tough to spend time together, just the two of us, you know, and even taking her places. Such as, it’s very difficult to get on a plane because of her behavior issues and her lack of patience to be able to be on a plane that long.
The maximum time that we’ve flown with her effectively is about two and a half hours before she gets a little upset and antsy. So it limits how we can travel. We have to do a lot of traveling on the road, which involves a lot of driving, a lot of time to get places. And then we’re limited to being able to travel within the continental United States. So that puts a hamper on what we want to do, and it has for years. Her behavior issues are not bad, but there are moments where it’s difficult for us to go out to restaurants and eat a meal because of her impatience.
And not that she’s very bad, you know. She just likes to get up and walk around, and she may invade someone’s personal space. It gets challenging going out in public. As she’s gotten older, she’s getting a little bit better. But earlier, you know, I could see the devastation in my wife’s eyes fairly regularly when we would go out in public. Not in an embarrassing way, but more along the lines of—and I’m gonna speak for her and say, “Just tired of not being able to do things, or not being able to do things alone with my husband, because everybody can’t care for her while we’re gone.”
So it has been very challenging, but we’ve come up with several different ways to kind of mitigate those challenges and still be able to travel, whether it’s taking an RV, taking short flights. We go out on a boat and do different things, and we’re just trying to do things that she will enjoy and at the same time we can get some enjoyment out of it.
Every now and then we’ll have a caregiver that can cover for us so we can do a few things together. But like right now we do a lot of traveling alone—alone in the sense that she may travel with friends and family, and I may travel with friends and family, and maybe once or twice a year she and I can travel together. So it has definitely been a challenge going forward, but not one that is impossible to combat.
David Hirsch: Yeah. Well, thanks for sharing. It sounds like it’s been a journey, and you’ve had to make some real adjustments. So you’ve talked about the impact on your marriage. I’m wondering what, if any, impact Chloe’s situation has had on her siblings, or the rest of your family for that matter.
Lenn Boston: So her impact has been more felt by my second oldest child, Ashante, because she was actually living with us at the time when Chloe was born. So she was there to experience her mother being pregnant with another child. And Ashante was the only child until she was 16 years old. So now she has to deal with another child coming into her life, and that was kind of difficult for her.
And then once Chloe was diagnosed with Angelman Syndrome, she became more the center of attention. And in that sense, I think that made it much more difficult for Ashante to understand why Chloe was more the center of attention. Ashante was on her way to college, and we tried to balance showing her as much attention as we were showing Chloe, but Chloe just needed more because she needed us to help her more.
So it took some time, but I’d say by the time Ashante was in her mid-twenties, she became more of an advocate for Angelman Syndrome, more of an advocate for her sister.
David Hirsch: Well, thanks for sharing. It’s not a straight line, and the relationship, the age difference of siblings, has a great influence on the circumstances.
Many will say that there has been a positive impact, that the siblings, whether they’re younger or older—they’re older in your situation—mature a little bit faster, they have a better understanding, they’re more patient, they’re more empathetic to people with differences than they would be without having that sibling. Again, thanks for sharing.
So I’m thinking about supporting organizations that you’ve relied on, either directly for Chloe’s benefit or for your family’s benefit. Which organizations have had the most influence?
Lenn Boston: Well, I would say that FAST, Foundation for Angelman Syndrome Therapeutics, provided the most as far as education through the symposiums that we’ve attended every year for the last seven years, that are held right there at the Hyatt Regency in Chicago.
We meet with the researchers, the specialists, other parents, the foundation itself, and we gain a lot of knowledge about what other parents are experiencing, what research and development is in process, what research studies are going on, and what drug trials are going on. They’re very informative in that nature.
Also Chloe took part in a research study on a drug trial last year that seemed to be working very well for her. Unfortunately, the program was discontinued. But we think that the results of the drug trial were beneficial to her educationally.
With that being said, as far as locally, a children’s special family center based out of Lansing, Michigan, as well as Children’s Special Healthcare Services, which are encompassed in the same building, have been very monumental in helping her as far as the services that are available to her, providing peer-to-peer support through a family center.
And also just giving us the opportunity to link with other families that have a child with Angelman Syndrome here within the state. With that being said, Chloe attends a school that is designed for special needs children, but it is publicly funded. And the services that are provided are on a scale that are comparable to private organizations. The name of that school is Woods Edge Learning Center.
David Hirsch: Excellent. We’ll make sure to include that in the show notes as well. Any other organizations that have played an important role?
Lenn Boston: Well, you know, Parent To Parent USA, of which I’m a board member. Their role initially would’ve been that of connecting us with parents nationally. They have the ability to reach out to other states and other organizations, allowing us and other parents that may be in need of that peer-to-peer support to get that type of resource.
So I would say they didn’t play as much a role as they could have, only because I wasn’t aware of them at the time.
David Hirsch: And just to dive a little bit deeper, what is the Parent To Parent USA organization about? What’s the mission, the scope of the work that they do?
Lenn Boston: Well, their main scope is to provide peer-to-peer support for parents of children with disabilities. Their mission is basically to be able to reach into all 50 states, and to provide that service or guidance to resources within that state. We currently have member organizations from 38 states. Obviously the goal is 50, and our mission is to ensure that there are basically no parents and no states left behind.
David Hirsch: I love it. And what is your role as a board member?
Lenn Boston: Well, I am currently on two committees. I’m on one that deals with member organizations. So what I do is reach out to organizations that I think may benefit from becoming a partner or friend to P2P USA. I just recently I reached out to FAST and ASF, and they have become P2P partners within the last month.
I’m a very thankful for that, because it gives us an opportunity to reach out to families of Angelman children and adults and let them know that there are other resources available to them, not only within their state, but nationally, that deal with Angelman Syndrome and families that can provide information and peer to peer support. For example, if you have a younger child, I have an older child, I can give you guidance on what you could possibly expect as your child becomes an adult and, you know, vice versa.
So, it’s a great opportunity to really span, not only nationwide, but globally as well.
David Hirsch: So is it a domestic organization, or do they have an international presence as well?
Lenn Boston: They are a domestic organization, but some of the organizations that we have become friends with, such as FAST and ASF, are global. So being able to work with them and share between the two of us gives us the opportunity to reach a global audience if possible.
Additionally, not only am I on the membership committee, but I’m also on the social injustice committee, and what we do is reach out and hold webinars and conferences and hopefully some podcasts here soon where we discuss the social and medical inequities to black and brown people.
David Hirsch: Yeah, that sounds like it would be very important, because I think that community is underserved. At least that’s my observation.
Lenn Boston: And then I will mention a third group that I’m going to be possibly heading up, and this one will be very specific and of importance to you. We are trying to start some sort of dad engagement that is connected to P2P USA. We have found through our surveys from some of our members that they would like to see if we could put together some type of committee or task force that is aimed directly at getting dads involved.
David Hirsch: Well, that’s music to my ears. If there’s anything we can do from the Special Fathers Network perspective to help engage more dads, count us in.
Lenn Boston: Thank you very much.
David Hirsch: So I’m thinking about advice now, and I’m wondering beyond what we’ve discussed, if there’s any advice you might be able to share with a dad who has a young child, not necessarily just with Angelman’s, but special needs, whether it’s autism or Down syndrome or cerebral palsy or rare disease.
Lenn Boston: So my advice would be that no matter the diagnosis, that is your child, and you owe your child the opportunity to grow up with the best possibility or the best quality of life they can have. And in my opinion, the only way that can be attained is in that two-parent household.
I’ll say this. You may not be with your spouse or significant other, but that doesn’t mean that you can’t have full involvement in your child’s life and growth and development. And in my opinion, from what I see, a child grows and learns and develops at a higher quality of life when both parents are involved in some way.
Mom provides the opportunity for learning and growth in her way, and we dads provide it in our way. But both ways are still necessary for our child’s development. I look at my daughter, and I say to myself, if I wasn’t a part of her life, how would she have grown up? Knowing that her mother is fully capable of raising her, but it is so difficult to raise a child, any child, whether it’s special needs or not, as a single parent.
It is so tough. Whether you’re a single father doing that or you’re a single mother, it is very difficult. And when that other parent is absent, I honestly believe that the child misses something very special in their development. So I will say to anyone that, no matter what, you should try to do the best you can. I wouldn’t ask anybody to do anything but their best to try to engage with their child.
David Hirsch: Yeah. Well, great advice. I think that, similar to what you were saying, the 21st Century Dad’s Foundation—the work I’ve been doing in the name of the Illinois Fatherhood Initiative for the last 24, 25 years—is a direct result of the fact that there are way too many children growing up in single parent families.
Unfortunately, most of them are mom head of household families, where the dads are not present. And all the state really cares about—I’m going to get up on my soapbox for a moment—all the state really cares is that a dad meets his financial obligations. But really what kids need is more than the money, the financial support. They need to have a positive adult male role model present in their lives, physically, emotionally and spiritually. And I think that’s what you were getting at as well. So thanks for emphasizing that.
So I’m sort of curious to know, why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Lenn Boston: I think that probably it’s because as a father of a special needs child, I didn’t really have a mentor father or a mentor person. I kind of winged it, so to speak. I learned on the fly, and I kind of used my experience raising three other children and applied that to raising Chloe.
But it would’ve been nice to have been able to speak to someone who has gone through a similar experience, but as a dad. The the moms can tell it to you in one way, but it would be really more helpful if it was coming from a dad’s perspective.
So being in this unique opportunity or unique position to provide some guidance and knowledge based on my experiences, I hope would help a father going forward with, say, a younger child, or even an adult with special needs, as far as providing what knowledge I know and what I’ve learned from other parents and apply that to someone that I might be mentoring.
I mean, I feel men could benefit from the experiences I have been involved in, not only as a parent, but as a person in the military who was in a position to mentor and teach young sailors over the years. And it’s been probably thousands that I’ve had in my charge since being in the military. Having those opportunities to learn methods of teaching and mentoring and then to be able to bring that home in a more of a civilian atmosphere, I think they could benefit from what I have to say.
David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you so much for engaging as one of our mentor fathers as part of the Special Fathers Network. I’m wondering if there’s anything else you’d like to say before we wrap up.
Lenn Boston: Well, I first would like to say I appreciate the opportunity to be in this position to even provide just an inkling of what I would like to share. I enjoy speaking and sharing my experiences. I wasn’t always like that, but over the years I have learned that we all have something to say. We all have experiences in life and have something that could possibly help someone else. Again, I just appreciate the opportunity, and I’m humbled to be able to even be in this position to possibly speak to others.
David Hirsch: So if somebody wants to learn more about FAST, ASF, or Parent To Parent USA, or just to contact you, what’s the best way to do that?
Lenn Boston: So for FAST, it’s cureangelman.org. For P2P USA, just p2pusa.org, and it’ll take you to their webpage. You’ll be able to learn about our organization, learn about our mission statement, learn about our board members, and just to add this, all of our board members have a family member that has special needs or some type of a disability. So all of us are aware of what you are going through, and the things that we can share personally may help as well.
David Hirsch: That’s fabulous. I’ll be sure to include those in the show notes as well. Lenn, thank you for taking the time and many insights. As a reminder, Lenn 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.
Lenn, thanks again.
Lenn Boston: You’re very welcome.
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.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story, or know of a compelling story, please send an email to David@21stcenturydads.org.
Tom Couch: To find out more about the Special Fathers Network, go to 21stcenturydads.org. This program was produced by me, Tom Couch. Thanks for listening to the Special Fathers Network Dad to Dad Podcast.