035 – Ascendigo President Peter Bell on raising an autistic son.
Special Father Peter Bell tells David Hirsch about life raising an autistic son. Peter also shares his experiences helping other families deal with autism in his role as president of Ascendigo Autism Services.
Dad to Dad 35 – Ascendigo President Peter Bell on raising an autistic son.
Peter Bell: Every now, and then I kind of say, I need a break from autism, which unfortunately, you know, it’s hard to do completely, but you learn to kind of figure out how to manage that and do your best to basically live in the moment and do everything you can to hopefully make a difference, not only for your own child, but for other people that are experiencing the same kinds of challenges.
Tom Couch: That’s the president of Ascendigo autism services and father of three Peter Bell. And Peter’s our guest today on this dad to dad podcast. And here’s our host a man who’s spent decades advocating for fathers David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad, podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our. Personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.
Tom Couch: So let’s listen now to David Hirsch’s conversation with special father Peter Bell.
David Hirsch: I’m thrilled to be talking today with my friend, Peter Bell of the salt, Colorado, a father of three, and president and CEO of the Ascendgio autism services in Carbondale, Colorado. Peter, thank you for taking the time to do a podcast interview. For the special father’s network.
Peter Bell: It’s a great joy to be able to do this.
And good morning to David
David Hirsch: you and your wife was then married for 29 years and other proud parents of three children. Avery is 20 Derek, 24 and Tyler twenty-five who has autism. Let’s start with some background. Where did you grow up? Tell me something about your family.
Peter Bell: Well, I grew up in the Western suburbs of Chicago, a little town called Hinsdale.
And, uh, I was the youngest of three children. I lived, uh, I think a pretty normal childhood. I’ll be at my parents divorced when I was a young teenager. So my life, uh, prior to leaving home and going off to college was a little bit unique and different from most of my peers and that I was raised in a, um, Household that had a mom and my older brother and sister had gone off to college and I just kind of had to grow up a little bit sooner than some of my peers, but, uh, that’s probably the only major difference.
David Hirsch: So you’re the youngest of three brothers or sisters
Peter Bell: have an older sister and an older brother.
David Hirsch: Okay. And what do they do
Peter Bell: by sister is, uh, more or less retired. She was a travel agent and, uh, lives with her husband and Wheaton. Uh, they do not have any children. And my older brother is a banker. He works for the Northern trust bank and he runs the Western region for the Northern trust bank out in California.
And he and his wife also do not have any children. So my wife and I are the only ones that have children within my immediate family.
David Hirsch: So the grandchildren are yours as opposed to your brothers and sisters, then
Peter Bell: that is correct. Yes.
David Hirsch: So how would you describe the relationship with your dad?
Peter Bell: Well, you know, it’s an interesting question.
Um, as I said, my parents divorced when I was about 12 or 13, and so, and then he moved out of the house. And, um, for a variety of circumstances, we were not terribly close during that period. Uh, but our relationship did develop once I went to college, you know, we spent quite a bit of time together. Uh, he came and visited me at college.
A number of times I was, uh, an athlete. And so he came to a number of vine meets and so forth. You know, I would say that, uh, ever since then it’s been quite good. He was a businessman and someone that I looked up to. You know, in terms of his role and what he was able to accomplish professionally and so forth.
Um, but you know, he also was not, um, I guess, a constant presence like, uh, most fathers were, um, during my teenage years.
David Hirsch: Okay. Uh, well, I’m, I’m familiar with that situation. My parents divorced when I was six, my younger brother was five. My dad moved away and you know, didn’t have a lot of contact with them for quite a few years.
Know it impacts you right. Sometimes positively, sometimes negatively. And I think those experiences help us, uh, make better decisions. As we became parents ourselves, you know, being there, being present and really trying to figure out how to connect all the dots. So I’m wondering, is there any advice that your dad might have given you as your relationship was rekindled or more recently?
That’s helped you put things in perspective?
Peter Bell: I think the advice my father gave me throughout my life was, you know, how to be a good role model for those around me. You know how to treat a spouse, you know, those kinds of things. He’s a pretty philosophical person and he’s very well read and, uh, I remember when I graduated from college, he wrote me a letter and included in that letter were quotes from a number of pretty famous people.
He was a big fan of Winston Churchill and a number of other political leaders, uh, during those days. And. You know, he very much taught me how to be a good person and ethical person. You know, someone who very much relied on your word, how you treat people. And he was a good role model and he enjoys good healthy relationships with both my brother and my sister and myself.
And. He has always been someone that I could look up to and feel like I got some good guidance on how to be a good father, a good role model, a good friend, uh, and you know, most importantly, uh, a good person.
David Hirsch: That’s great. So I’m wondering, um, were there any other father figures when you were growing up or perhaps as a young adult
Peter Bell: for that matter?
So my mother remarried when I was in college. Uh, so I had a stepfather who ended up being in my life for about 30 years. He unfortunately passed away three years ago from Alzheimer’s.
David Hirsch: I’m sorry to hear that.
Peter Bell: He was someone that I looked up to in many ways and I. Think had a father figure role in my life.
I’ll be it, you know, when I was older and I definitely was surrounded by some positive role models in my life that I’m sure probably had a profound impact on shaping me and to being the dad that I am and has had a positive influence as well.
David Hirsch: That’s great. So you went to Cornell, you took a BS in hotel administration, and then you went to the Kellogg graduate school of management at Northwestern university, which is something we have in common.
Yes. To get your MBA. When you were first starting your career, where did you think you were going with all that?
Peter Bell: You know, when I was a kid, I had made this decision, I wanted to be a hotel manager. I remember in seventh grade, one of the projects we had to do was my future me. And so I did it on being a hotel manager and I was pretty committed to doing that.
And then I decided to go to Cornell to get my degree in that field. And, uh, I always thought that I was gonna stay in the hotel industry and I kind of. I ended up taking a slightly different path and going into consulting. When I graduated, albeit I was, uh, in, uh, involved in an accounting firm that had a consulting practice in the hospitality industry.
Um, and I did that for a year and then spent three years with another real estate syndicator, um, that had a sizable investment in hotel properties throughout the country called Metro partners. I then decided that I wanted to go back and get an MBA. I enjoyed some good success early in my career in the hotel industry and decided I, it would be important for me to have a degree in business that would help broaden my.
A scope of experiences and so forth. And for a variety of reasons, I decided to go into brand management and went to work for a division of Johnson and Johnson when I graduated from Kellogg. And so I was more or less in the pharmaceutical industry for about a dozen years after I got my graduate degree in business.
I enjoyed it a lot. I enjoyed marketing. I enjoyed kind of helping people with products that could make a difference in their lives. Obviously it was during that time that I, my wife and I started having kids. And obviously I realized that I had one that was special or had special needs. And I think eventually decided that I wanted to do something that would be helpful to him as well as the community that.
He’s a part of,
David Hirsch: well, um, I know that you’ve spent, um, a good portion of your career. Subsequent to your, what I’ll call for profit experience, um, in the world of autism. And I’m wondering, um, before Tyler’s diagnosis, um, did you and Liz have any connections to the special needs community?
Peter Bell: We really didn’t. Uh, we have no other family members that has any kind of a disability or special need of any kind.
So I know, uh, back in college, I, uh, Did some, uh, philanthropic projects with my fraternity, that involved special Olympics. But other than that, uh, we had no experience in dealing with the special needs community.
David Hirsch: Okay. So what is Tyler’s affliction and what was your first reaction upon learning of Tyler’s diagnosis at his age three?
Peter Bell: So Tyler was originally diagnosed with a condition that’s called PDD nos, and that stands for pervasive developmental disorder. Not otherwise specified it is considered or was considered at the time to be part of the autism spectrum. That changed back a couple of years ago, I think 2013 or 14 when DSM five came out and basically grouped all the autism conditions together under autism spectrum disorder.
But, uh, his original diagnosis was PDD nos. And I remember in the developmental evaluation appointment that we had at children’s hospital, Philadelphia, where he was diagnosed, the developmental pediatrician. Gave us the diagnosis and saw that we were rather upset or, um, you know, obviously we’re grieving for our son and what they were telling us.
And she kind of looked at us and said, well, why are you so upset? I, I, you know, I said he has PDD nos. It’s not autism. And so, you know, unfortunately we probably went through about a week of denial and not knowing that PDD nos actually was on the autism spectrum. But, uh, we later were able to laugh it off because, uh, it really ended up, uh, becoming obvious to us that PDD actually stood for physician didn’t decide, which was, you know, they basically didn’t want to tell you that your child had autism.
So, um, needless to say, that diagnosis has gone away and, and, uh, our son does have, uh, autism spectrum disorder.
David Hirsch: So that was your first reaction was sort of. Puzzlement denial. And then as the dust settled, you just come to grips with the fact that, okay, it’s autism. We just have to move forward.
Peter Bell: Yeah. You know, I think, um, we walked away knowing that it was something like autism.
Um, my. Father-in-law my wife’s father was an elementary school principal and he more or less counseled us to stay away from the, a word as he called it. Um, because we didn’t really know what the outcome was going to be. And if in fact he was going to continue to have autism for the rest of his life. So I would say that we were.
Pretty careful early on. Uh, it was not something that we shared, uh, beyond our immediate family. In fact, I don’t think I ended up telling anyone beyond my immediate boss at work for at least a year or so after we received that diagnosis, you know, it was something that we were fairly guarded about. That being said, I do remember the conversations we had with our family members after.
We received this news and we were making phone calls and so forth. And, you know, we were from the get go very committed to doing everything we could to maximize the potential of our son, Tyler. So when that still is true today, you know, I think that was probably the memory that I have the most, which was just a said fast.
And unconditional love for our son and knowing that we were going to do everything we can to make him have a really good life. That’s
David Hirsch: fabulous. So other than the advice you received from your father-in-law about using the, a word, was there any other advice you got relatively early on that you can look back and say that was instrumental or that was really helpful
Peter Bell: for us?
Well, I know one of the biggest influences on us was reading a book that was recommended to us not long after Tyler’s diagnosis. And that was, let me hear your voice, which is written by Catherine. Maurice. That was, I think, first published in the early nineties. And it was a mother’s. Story about basically helping two of her children who had an autism diagnosis recover through the use of applied behavior, analysis, interventions, and so forth.
And so I think that. Gave us the sense of, you know, autism is treatable, you know, against what most medical authorities said back then, which was, there’s really nothing you can do to change the course of autism. There really absolutely is. And I think that is, is very well supported today. And I think, you know, one of the few things that.
Really the autism community can agree on is the importance of early intervention and getting a diagnosis as early as you can. You know, I think that had a big impact on us. And I, you know, I also think back to that same developmental pediatrician, looking at us and said, well, I have no doubt that you’ll eventually get some kind of a PhD in autism.
You may not go back to school for it, but you know, you strike me as the kind of parents who are going to make a difference in this field. And I guess that was hopefully a little bit of foreshadowing about our commitment to making a difference in the world of autism.
David Hirsch: Yeah, well, that was a very insightful comment.
Peter Bell: So
David Hirsch: I’m wondering what were some of the more important decisions you and Liz have made raising three children, including one with special needs.
Peter Bell: I think, uh, you know, and I’m sure this is no different than any other family or parents with multiple children. You know, we treat all, all of our kids as much the same as possible.
Um, I guess it would be not fair to say that our parenting style is the same for every one of them, but obviously we’re deeply committed to their health and wellbeing and, and. Allowing them to be all that they can be. I think as a family unit, we always made a commitment that we were in this together, whether it was bringing the other two along to therapy appointments or bringing Tyler along to sporting events that his brother and sister were participating in, everyone has to participate and make sacrifices.
And. Share in, you know, what the family does as a family unit, I guess. And so I do think that we’ve made, always made those kinds of decisions that we were going to travel as a group. And if one child was having a good day and the other two or one was not, then we just persevered and powered through. I think, you know, our other children who are the brother and sister of Tyler have come to realize that.
You know, we do love everyone in our family in the same kind of ways. And so, yeah. Yeah, every now and then, you know, you might get a roll of the eyes or the side of, do we have to do this again? Or why is it this way or what have you. But, um, you know, I think all of our kids have grown to recognize that, you know, we’ve done everything we can to kind of keep us all together as a group.
And we’re in this together. At the same time, you know, I think you have to work hard to not make it seem like it’s a burden on any one individual or sibling or what have you, you know, we’ve worked very hard to make sure that they realize that their lives and futures aren’t necessarily going to be encumbered by.
Their brother or what have you? Um, I’m sure they have a sense of knowing that at some point they may have to take over some degree of responsibility, but I think they also know that we’re doing everything we can to make sure that they don’t ever feel like they’re gonna have a significant burden on their hands by being able or having to take care of their brother.
No different than, you know, probably you would feel about having your parents get to an age where you realize you’re going to have. Probably have to be more involved in their lives at some
David Hirsch: Exactly. So what I think I heard you saying is that it’s been a balancing act. Yeah. Trying to keep the family together, doing things as if everybody was the same,
Peter Bell: right?
David Hirsch: Everybody’s got needs. They do some are more special than the next. It takes a little bit extra energy to do that though.
Peter Bell: It does,
David Hirsch: because it’d be really easy to say, Oh, you know, we’re going to leave Tyler behind, you know, with the babysitter or somebody watching them. So we can go off and do things.
Yes. Be more flexible and not have to worry about the consequences or moments that happen. But those happen in all families. You don’t have to have a child with special needs. It’s great. You know, somebody has a meltdown, you know, that’s just the way it is. So, uh, I just admire you and Liz for. Making that effort and just being very deliberate or intentional about what was important for your family and just, you know, dealing with the exceptions.
That’s just what a committed parent does.
Peter Bell: Sure. Well said.
David Hirsch: So what are some of the biggest challenges you’ve encountered over the years?
Peter Bell: I mean, I, you know, I think there are the typical challenges of being a parent of any child. You know, you have some good days and bad days and, you know, eventually you have to go through puberty and, you know, sometimes it’s hard to go through different phases of life and, um, excuse me, uh, got a little dog tour here.
Um, Tyler has had a number of medical conditions that have arisen over the years. That were definitely challenging when he was a, in his early teens. He had a, about a year or two of, um, catatonia, uh, which. Is not any fun to go through and unfortunately occurs in about 15 to 20% of cases of autism. Most of which is undiagnosed quite honestly.
But nevertheless, you know, that was a pretty big challenge. And more recently we’ve had to deal with the fact that Tyler also has epilepsy and in addition to his autism, and that certainly, um, is frightening and presents quite a bit of challenges as well. You know, I guess the only other thing I’ll mention is that, you know, when you make a decision to kind of commit your career to working in the field of autism, you end up basically.
Living autism 24 seven. Um, and so, you know, some people can go to work and kind of escape and do something completely different. Um, when I go to work, I’m still dealing with autism. I’m dealing with other families who have kids with autism, I’m dealing with their highs and lows and so forth. And then at the end of the day, I go home and I deal with my own very personal form of autism.
So. Every now, and then I kind of say, I need a break from autism, which unfortunately is hard to do completely, but you learn to kind of figure out how to manage that and do your best to basically live in the moment and do everything you can to hopefully make a difference, not only for your own child, but for other people that are experiencing the same kinds of
David Hirsch: challenges.
Well, I appreciate your authenticity and especially about the part about dedicating your career. To those that have autism in addition to being a father or a parent of a child with autism, right? Like you said, it’s 24 seven. What came to mind is I’m a father of five and I’ve been advocating for kids and dads for Oh 21 going on 22 years now.
And whenever my wife would get frustrated with me because I was spending too much time called away from work away from family, she would be very quick to get my attention and say, Hey, mr. Fatherhood, maybe you should be spending some more time with your own children as opposed to trying to solve everybody else’s problems.
Peter Bell: Right?
David Hirsch: So I’m confident. Liz has never said, Hey, mr. Autism, maybe you should be spending some time with your own son versus spending all this time elsewhere.
Peter Bell: Perhaps you’ve been secretly in our house at that point in time. I have heard that
David Hirsch: that’s just a, it’s real, right. I mean, when you’re really committed to a cause and you’re passionate about something, you know, it’s easy to sort of, I don’t know if it’s the kid out of balance, but not be able to put it all in perspective.
And I think it’s really helpful to have a spouse that, you know, you can rely on and lean on each other. You know, when you realize things are a little bit off center
Peter Bell: that’s right. So I’m wondering what
David Hirsch: impact Tyler situation has had on his siblings as well as the extended family.
Peter Bell: So I, you know, I would probably characterize it as I think it’s had a positive impact on them.
I think they grew up. With an appreciation for differences in people and how they present. I think they’re very compassionate, empathetic individuals. And, um, you know, I’ve seen them stick up for people who perhaps have been picked on or bullied or whatever, because they understand what it’s like to be, you know, outside of the norm.
I think it’s taught them a lot about being resilient open-minded and less judgmental, um, than perhaps some of their peers. And, you know, I don’t know exactly where they will end up in life and what their careers will be or whatever, but. I would not be surprised if, you know, in some shape or form they are doing something that might be relevant to this population or to the field.
You know, I think it’s probably inspired them and touch them in a way that they do want to be able to make a difference. You know, the other family members, so grandparents and aunts and uncles and so forth, you know, in many ways it’s allowed all of us to be even more of a close knit family. You know, I think we’ve always felt supported emotionally, financially, physically, and so forth.
We know that if God forbid something does happen to us, Others will step in and play, hopefully a very similar role. Um, you know, we have never felt like people judged us or, uh, looked at our parenting abilities or. Did anything other than just wanting to support a family member who means a tremendous amount to them?
So we’re feeling very blessed to have an incredible support system that goes beyond just our immediate family and extends into our respective families as well. That’s
David Hirsch: terrific. So what are Derek and Avery doing now?
Peter Bell: Derek and Avery actually both ended up deciding to go to school at Colorado college in Colorado Springs.
Derek graduated a year ago and decided to spend the past year as a volunteer teacher with an organization called a world, teach in the Marshall Islands, which is a set of eight atolls out in the middle of the Pacific ocean, somewhere between Hawaii and the Philippines. And so he just returned about a month or so ago from having spent a year in a very remote part of the world.
Teaching young children, English, math, science, and so forth. And it was pretty incredible experience. He’s back at home with us now and is actively looking for full time employment and is hoping to land a job somewhere in Denver. So, if anyone’s looking for a really wonderful, bright young man, who’s had a wonderful childhood and educational experience, feel free to give me a call or I’ll put you in touch with him.
Avery is a sophomore at Colorado college and is I think, planning to major in environmental sciences. Although she took a course in special ed her freshman year, and of course did very well and, and, uh, you know, has. Possibly an interest in pursuing something there, but Derek was a mathematical economics major.
So I don’t see him necessarily getting into the field of special needs or special education or anything, but they are making their way in life and I’m sure they will do very well. That’s
David Hirsch: great. So I’m thinking about the type of organizations that, uh, you and Liz have relied on for Tyler’s benefits. What comes to mind?
Was he involved with special Olympics or anything like that?
Peter Bell: Tyler has been involved in special Olympics throughout the years. You know, I think they’re a wonderful organization. I have always felt that the special Olympics has not probably understood autism as well as they should. Yeah, I think they do really well with a lot of the other types of developmental disabilities.
I’ve seen a lot of athletes with autism struggle because, you know, they have a tendency to create their own path and maybe not necessarily follow the rules the way they’re supposed to and so forth. And so I do think there’s probably an opportunity for some of the special Olympics organizations to understand how autism is different from some of the other IDDs.
Which for those that are in the disability field know is known as intellectual and developmental disabilities. So special Olympics has definitely, uh, had a positive influence on Tyler, albeit, you know, required us to be maybe a little bit more involved because a lot of the volunteer coaches sometimes struggle to be able to support the athletes that that might have autism.
Um, but there have been a number of other organizations that Tyler was involved in best buddies. When we lived in Princeton, uh, there was a nice little chapter at the university there. He’s definitely been involved in a lot of community based activities.
David Hirsch: Okay. Painting is something, uh, that Tyler is really good at, and that’s really had a positive impact on his life.
Tell me more about that.
Peter Bell: Sure. So, uh, when Tyler was, Tyler has always actually loved colors. I remember when he was a little kid, probably about six or seven years old, and he was working with an OT and she kind of taught him how to color and used a variety of techniques to do that. And once he learned how to do that, you know, the world kind of opened up to him and he really just loved, uh, blending colors and making different kinds of drawings and so forth.
I think when, when he was probably in his late teens, we decided to kind of expose him to the art of painting and using acrylic paints and canvas and things like that. And he really took to it beautifully for probably about a three to four year period. He was. Quite prolific and painted a lot of different things.
We actually formed some relationships with two different painters who kind of mentored him professional painters. That is our artists. And they really had no experience in working with an individual with autism, but they were really intrigued by the whole concept and, and they did a wonderful job of kind of helping to expand his.
Repertoire of how to paint different kinds of images from the, either the abstract to the very concrete and so forth. Um, and he produced quite a few paintings and we did donate some to different charities and they did quite well in different auctions and actually even got commissioned by a couple.
People. So he has art in probably 20 to 25 different locations around the world. Some are in lobbies of significant size corporations and so forth. But unfortunately, uh, probably about two years ago, he’s seem to lose a little bit of interest. Of course, it’s. Kind of coincided after my wife decided to open a store in New Jersey where we were living and wanted to try to sell some of his, uh, paintings.
And for whatever reason, I think he just decided that he was not as interested as he once was. So, you know, these things kind of have a way of taking different turns here and there, but we have a lot of wonderful reminders and who knows, he may pick it back up someday, but, uh, There was a period in his life where a painting was kind of a really big, big deal for him.
David Hirsch: That’s fabulous. I’m so pleased to hear that, that he was not only prolific, but, uh, the paintings did very well. Right. As far as the reception at different charity events, were there any exhibits yeah.
Peter Bell: That he did now? He did do some exhibits. Actually one of his pieces was sold in Carnegie hall, in New York city at a fundraising event.
He did. A number of exhibits in New Jersey, near Princeton, where we were living one at a local hospital and other one at a local, uh, fitness gym. You know, he, he had a lot of good success. So who knows where we’re hoping that someday he’ll decide to. Bree orient himself in that direction. Cause he does have actually quite a bit of talent.
We a actually he’s been going to the local play center here and doing some pottery and, and has painted a few of those pieces. So we’ll, we’ll see how it evolves.
David Hirsch: Well, he’s a budding artist. Yeah. And sometimes those things do take a different trajectory. And uh, if I heard what you were saying earlier, the store was called or is called chance on Maine.
It is. Yeah. And, um, It seems like a Murphy’s law type of situation. Liz opens the store and her go-to artists. Yeah. Decides it’s not as important to me anymore. Oh my gosh. What are you talking about?
Peter Bell: Yes, exactly. But it’s, it’s kind of a neat, neat concept. It’s a very quickly, uh, just, uh, a little store in town.
Just outside of Princeton, as you said, it’s called chance on main. And, uh, she sells a number of different, uh, gift items, accessories, and things like that. All of which are made by people who otherwise need a chance. And so there are different kinds of populations of people who make everything from different kinds of soaps to candles, to some artwork and so forth.
Obviously there’s a very strong social. Then to all the different kinds of things that she sells in the store, and she’s got a very nice local following and we still own and operate the store from afar. And she’s got a team of people that help her out to, to make it happen. So it’s a, it’s a nice little story.
David Hirsch: That’s fabulous.
so let’s switch gears and talk about, uh, what I would refer to your experience in the world of autism, beyond your own. Personal experience. You’ve spent quite a bit of time in different organizations. One was cure autism. Now, when you are in LA, after that it was autism speaks. Yes. And then, um, Eden autism, before you took on the responsibilities that ascend to go, but just provide our listeners with a brief history on what was going on with each of those experiences.
Peter Bell: Sure. So, um, I had obviously spent my, uh, 12 years in big pharma and working through the ranks of the marketing area. And what have you during most of that time? Uh, I was also raising Tyler and Derek and eventually my daughter Avery, and, you know, I kind of got to a point in my career there that I felt there was an opportunity for me to do something that was.
More significant, uh, and, and, uh, could, could potentially make a difference in the world of autism. And so I actually, while I was working at J and J went to my management and asked. For, uh, an opportunity to kind of figure out if there was a way for J and J to get more involved in developing perhaps products that could be potentially helpful to the autism population.
So I was fortunate to have a manager who was able to make that work. I was kind of given about. 12 to 18 months to really navigate the organization and any way I could figure out and ultimately, and you know, it’s obviously a more involved story or whatever, but ultimately J and J ended up being the first company to get an indication for a drug through and approved by the FDA.
You know, it’s a medication that is typically used for individuals who have schizophrenia and other. Mood altering, uh, types of conditions and so forth, but it does have some applicability to autism and some of the aggressive behaviors that sometimes present in certain situations and so forth. So not long after, you know, that happened is kind of when I decided I wanted to turn my attention full time to.
I guess being an advocate for the autism community. And so that’s when I left J and J and went to work at cure autism. Now we moved to LA and spent three years there leading that organization. It was one of the first national autism organizations that was really focused on the science of autism and really understanding.
What some of the underlying pathophysiologies might be and figuring out, um, you know, the, the basic science around autism and what could potentially be done to either prevent it or to make it better and so forth. So it was around also that time that. Autism speaks, kind of came on the scene and they merged with a number of different organizations, uh, cure autism.
Now was the third of three that they merged with. And so in 2007 cure autism now, and autism speaks, became one organization. And, uh, I did decide to stay on board after that merger, but we decided also that we wanted to kind of be back on the East coast. So we moved back to. New Jersey and settled in there for the next seven years?
Well, actually it ended up being 10 years, but I stayed with autism speaks for another seven years. And then eventually I decided to, um, get more involved in the service side of things. And that’s when I went and joined Eden autism services in Princeton, then I was there for three years before we moved out here to Colorado where I’m now running a San Diego autism services.
David Hirsch: it’s quite a dedication that you’ve had, uh, not only to Tyler and your family, but to advocate for families at large. So my hats off to you. So, uh, let’s drill down on a San Diego. Sure. What’s the mission of the organization.
Peter Bell: So San Diego is an organization that started about almost 15 years ago as a camp for kids with autism.
In a nutshell, our mission is to provide opportunities for people with autism to live very completely in their communities and to enjoy the same kinds of activities that the rest of the population enjoys as well. So we’re very successful at getting. Both kids and adults with autism to do different kinds of activities that quite honestly, most people would never expect them to be able to do.
And, uh, it’s a lot of fun to do it. And, uh, we’re very fortunate to be able to do it in a really beautiful part of the country as well. So I, as
David Hirsch: I understand it, there’s three categories of your programs and ventures being one life enrichment thing, a second, and outreach being a third, you just spend a minute talking about each one of those.
Peter Bell: Sure. So our ventures division is where, uh, where do our summer camps, as well as our winter activities. We also have a fall program for local families. That’s a Saturday adventure type of thing. And so a lot of it is centered around being able to do different kinds of sporting activities. We’re located, uh, as I said in the mountains of Colorado, uh, we’re kind of in.
A very popular place where people can go river rafting, mountain biking, uh, hiking up on mountains. Uh, we have access to a Lake where we do a lot of water sports, including. Wake surfing and, uh, water skiing and tubing and things like that. Uh, we do quite a bit of horseback riding out here. So, you know, we really do have access to a lot of amazing activities.
So that’s kind of our adventures division. Our second division is life enrichment, sometimes known as our adult services and where we, uh, focus on providing kind of a very rich life for the people that we serve. Some are in residential, uh, support with us, meaning they live in, um, homes that are located here in the carpet Dale area.
And we provide the, uh, uh, supports for them to be able to live as independently as possible in those homes. And we have some people who still live with their families and participate in our program on a daily basis. Um, employment’s a big part of our life enrichment. We think, uh, that it’s important for people to have productive lives and to be able to contribute to the communities.
And so almost all of our adult participants have jobs during the day. And we are fortunate to have a number of employers here in Carbondale that have really welcomed our adults into their companies and their stores and so forth. So, uh, at any. Time of the day. You pretty much can find an ascend ago. A adult that is hard at work here in the community.
And then our third division is outreach and that’s where we provide local services such as behavioral services and school consultations and things like that to local families. So, um, we’re a pretty well rounded organization. As I said, we are currently serving about 200 individuals with autism on a.
Annual basis. And we’re looking to continue to expand that as we go into the future. And
David Hirsch: obviously there’s people in the local community that are residents, but you attract people from
Peter Bell: far away. We do. Yeah. Our summer camp has kids. Um, I think the last time we looked at it, uh, we probably have. Campers that come from 30 different States throughout the country.
We have a few that come from Canada. People do kind of come from all over to participate in our summer program. And we also obviously have people who come from other places, uh, during the winter to enjoy the, uh, ski resorts that we have access to.
David Hirsch: That’s fabulous. What would you say the vision is for a son to go?
If you were to look out three or five years?
Peter Bell: You know, our vision is to continue to refine our model. Um, we have what we call the ascend ago method, which is kind of how we approach the idea of teaching kids and adults with autism, how to act, be actively involved in different sports, but also. To take a lot of those same kinds of principles and apply it to helping individuals be able to live as independently as possible within their communities.
So we, we know what we do works, but we really need to put some more discipline around it. To participate or, or to partner with researchers so that we can validate that the outcomes that we’re producing are meaningful and, and sustainable and, uh, you know, do make a difference. Um, and then hopefully once we have a lot of that, we would love to.
Be able to take this model and to take what we do here and to do it in other locations around the country. I think there’s a lot to be said by finding communities that are perhaps small and really understand the value of including people from all different walks of life and to present in many different ways and to recognize how important it is to make them feel.
Part of their, their communities. I do think that many people on the autism spectrum, not all but many do need to have the support of their communities and to have a lot of people there to kind of have built in supports for them to be successful in their lives and as well as the lives of those communities.
And so I think that’s kind of the vision is how do we create communities that are. Really set up to be successful in terms of supporting people with autism.
David Hirsch: That’s fabulous. How has the organization funded?
Peter Bell: So the programs that we offer are funded by the, uh, families, the individuals, um, you know, we unfortunately, uh, live in a part of the country and a part of the state that’s not necessarily, uh, inexpensive.
So, uh, the costs of providing their services are fairly significant. So what we’re not able to cover, uh, in terms of the fees that we charge and we do take. Other forms of funding, including Medicaid and private insurance and things like that. We have to fundraise. So, um, it’s really a mixture of the program, uh, revenues that are produced by the services that we offer as well as fundraising.
David Hirsch: wonderful.
Peter Bell: Today, autism is the fastest
David Hirsch: growing serious
Peter Bell: developmental disability in the U S one in 68 are now diagnosed ascend to go nose. Just one moment. One experience. One individual, one community can make a big difference in the life of someone with autism. Terry, my wife and I have always enjoyed skiing since we met, you know, over 20 years ago, John polling, a parent from Athens, Georgia.
Now, you know, after years of us feeling that Hannah’s autism was not going to allow us to share that as a family, having ascend to go and having your team able to. Can you chat at a ski where we could not, has really been a huge thing for us as a family, I send to go serves individuals across
David Hirsch: the autism spectrum
Peter Bell: through experiential community based learning opportunities and one-to-one relationships to enhance health abilities, personal growth, and social engagement.
David Hirsch: So in the world of advice, I’m wondering what some of the more important takeaways come to mind as far as raising a child with differences.
Peter Bell: I, you know, I think, uh, what’s probably most important. And I think back to the day that, you know, we received the news, that our child was going to be different and had a disability or a special need, you know, it really didn’t change the way that we felt about him.
Uh, as a parent, you, you love your child no matter what, no matter who they are, what they become or what they do and so forth. And, you know, it’s a really a. Incredible form of unconditional love. You know, I think that while it was hard to process that news and to, in some ways almost have, you know, maybe some of your dreams or preconceptions of what you think your children might be or how they might live their lives and so forth, it really.
Didn’t change the way we felt about him or any of his siblings either, obviously. So, you know, I, I think, um, and then this is maybe where, you know, there’s a spiritual aspect to this, um, God does have a plan for us. And sometimes that plan is different than what we think it should be. And you have to kind of put your faith into something that is bigger and larger than yourself and recognize that there is some kind of a reason why.
Things do happen and, you know, looking back, I think, you know, maybe God had a plan for us and he keeps, you know, guiding us in different directions and so forth. Then, you know, I can look back and feel pretty proud of the things that we’ve been able to accomplish. And yeah. As long as, you know, he’s willing to keep us here a nurse, you know, we’ll continue to try to do our best to follow that plan.
So, you know, I think that’s probably the biggest set of advice that I have is just to really love your child and, and, you know, maybe let go a little bit and know that, you know, there is someone that’s kind of guiding you and gonna figure out how we can best serve our time while we’re here on this planet.
David Hirsch: That’s great. So I’m wondering, as it relates to helping a child with disabilities reach their full potential, if there’s anything beyond what I think you said earlier, which is just including, you know, all your kids.
Peter Bell: Yeah.
David Hirsch: Typical kids and those with a disability and all your activities, all your family activities.
Is there anything else beyond that?
Peter Bell: I don’t, I don’t know. I feel like there’s almost so many things I could say, but I also. I do recognize that every journey, every family is going to be different. And so while it’s easy for me to say, you know, yes, we’re going to, you know, always include Tyler and everything that we do and so forth, you know, for the most part it’s always been manageable.
But I also know that, you know, there are certain situations where that can be extremely challenging. Um, and so, you know, I hesitate to. In part, any kinds of advice and then find out that, you know, sometimes it might not be possible or what have you. So, you know, I, I do appreciate the fact that, you know, every journey is going to be unique and different and, you know, until you can walk a mile in someone else’s shoes, it’s really hard to say something that may apply to all situations.
Uh, that being said, you know, I think. If there’s anyone that’s listening to this podcast that, you know, may not have a child with special needs or whatever, and they’re sitting there saying, you know, well, what can I do? You know, I think there’s a lot that the, uh, population at large can do in terms of being very understanding and being supportive and helping to, um, allow these individuals and their families to live really.
Fulfilling and rich lives. You know, I think of all the people who could potentially offer employment opportunities for someone that has a disability or a special need. And to just recognize that, you know, maybe not every decision has to be a financial one. It could be something that has, um, a lot of.
Merit and Goodwill and, and quite honestly it can be very beneficial to an organization. I think of all the companies and stores that, um, employ the people that we serve here at ascend to go. And almost all of them say, you know, we just love having so and so here every day, because it grounds us, it makes us happy.
You know, they teach us things that we otherwise wouldn’t. Understand and so forth. And so I think, you know, the general population does need to recognize just how special and unique people with special needs can be and to really open their arms and their doors to allowing them to be a part of our lives.
David Hirsch: You know, I think your point about being more accepting and inclusive is a really powerful one. And then opportunities for employment are sort of, uh, a key, right? To helping people maintain a certain amount of independence. Uh, as well as financial support for themselves. That’s right. So I have a question.
Why did you agree to be a mentor or father as part of the Special Fathers Network?
Peter Bell: Well, you know, I think, uh, being a father in a family that has special needs, uh, can pull you in a lot of different directions. I want to be careful because I don’t want to maybe sound stereotypical or whatever, but. There is a certain amount of pressure.
If you are a, you know, a significant contributor to the household income and so forth, you know, achieving the right balance between being successful and providing the financial means to a family. But it’s also just as important to be. Present and to be available and to be actively involved in everything that, you know, kind of takes place in that family.
And, and. That can pull you in a lot of different directions. Um, I think back early on in my career and in our journey, um, as a special needs family, it took me about five or six years to realize that I was in a position to make a difference, not only for my family, but also for the population that we were getting more involved in.
And I, you know, I guess ultimately made a decision to. Reorient my career into something that I felt was going to be helpful to not only our family, but many families who have a child with autism. So I guess I feel like I’m in a unique. Positioned to be able to share that experience with other dads and other people.
And, um, you know, I’m, I’m not gonna pretend that I have all the answers, but I can certainly share my own experiences and perhaps be helpful to others. So I think that’s more or less why I felt like, uh, being a mentor and involved in this network would be a good thing.
David Hirsch: So we’re very thankful that you have been.
Involved and willing to be involved going forward. You not only had firsthand experience with Tyler, but you’ve been doing this informally mentoring other families as you’ve met them for the better part of two decades. So we’re very fortunate to have somebody with your experience, not just personal experience, but I would say professional experience involved in the network.
So let’s give a special shout out to our friends, Stacy and Mike McManus in Barrington, Illinois for putting us in contact with one another. I’m wondering if there’s anything else that you’d like to say before we wrap up?
Peter Bell: I’ve enjoyed being able to kind of sit back and reflect on some of the things that I’ve experienced over the last 22 years.
Since I found out that I was going to be a father of a special needs child and. Uh, you know, it kinda changed everything, but, uh, you know, looking back, it’s been incredibly rewarding and fulfilling and, uh, you know, I’m very proud of the young man that my son has become. And, and also, you know, what’s become of my other children and, uh, how we as a family unit as kind of.
Managed to navigate our way through a lot of highs and lows. But, you know, I think that probably happens no matter what, whether you have a special needs child or not, you know, it’s definitely been an interesting journey and looking forward to, uh, figuring out ways that I can be helpful to the network that you’ve created.
David Hirsch: That’s fabulous. So if somebody wants to get information on a Sunday ago, autism services or champs on main for that matter or contact you, where would they go?
Peter Bell: So the website for the Ascendigo autism services is ascend to go.org. And the Acendigo is spelled A S C E N D I G O ascend. I go, uh, some people say, uh, so ascendigo.org and then chance on Maine, um, can be found on chanceonmaine.com and both the Ascendigo and chance on main have.
Facebook pages as well. So you could look them up there and follow us there or on Instagram or Twitter or whatever other social media is out there. So, and if anyone needs to reach me, um, my email
address is Pbell@ascendigo.Org.
David Hirsch: Peter, thank you for taking the time and many insights as reminder, Peter is just one of the dads who has agreed to be a mentor father as part of this Special Fathers Network, a mentoring program for fathers raising a child with special needs.
If you’d like to be a mentor, a father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcentury dads.org.
Peter. Thanks again.
Peter Bell: You’re welcome. Thank you, David.
Tom Couch: And thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of kids with special needs presented by the Special Fathers Network.
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, go to 21stcenturydads.org. That’s 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: And again, to find out more about the Special Father’s Network, go to 21stcenturydads.org, 21stcenturydads.org.