Our guest this week is Christopher Brewster of Waverly NY.
Chris and his wife, Kristen, have been married for six years and are the proud parents of three children: son Bowie (15) who has Angelman Syndrome, daughter Ada (17), and son Seth (26) who has Scleroderma, Short leg syndrome, Autism and more recently is undergoing gender transition.
From a professional perspective, Chris is a Community Engagement Manager for the Food Bank of the Southern Tier (Elmira & Corning area). He also works part-time as the Fatherhood Coordinator for Parent to Parent of New York State, connecting fathers of children with special needs to information and to reach other dads. Chiris is also a writer and a public relations/marketing professional with extensive experience in writing, advertising and graphic design, including being a staff writer for Southern Tier Life, a digital lifestyle magazine
Well hear Chris’ story on this episode of the Special Fathers Network Dad to Dad Podcast.
Show Links –
Email – firstname.lastname@example.org
LinkedIn – https://www.linkedin.com/in/chrisjbrewster/
Parent 2 Parent – https://www.p2pusa.org/
ASF – Angelman Syndrome Foundation https://www.angelman.org/
FAST (Foundation for Angelman Syndrome Therapeutics) – https://cureangelman.org/
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.
Chris Brewster: You learn like we all do when we’re dealing with kids in general, but when we’re dealing with people with special needs is you learn infinite patience. Or hopefully you learn infinite patience. It’s harder sometimes than others. It’s just the understanding that even though things that he’s doing that may seem defiant or may seem like he’s just picking on you, he’s just doing things to get a rise out of you. There are things that he just has no control over.
Tom Couch: That’s our guest this week, Chris Brewster, father of three kids, two of which have special needs. 16 year old Bowie, who has Angelman Syndrome and 26 year old Seth who has scleroderma, is autistic and is currently undergoing gender transition. We’ll hear the story of Seth and his family this week on the Special Fathers Network Dad to Dad Podcast. Here now is 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 closed Facebook group. Please go to facebook.com, groups, and search “dad to dad”.
Tom Couch: So now let’s hear this intriguing conversation between Chris Brewster and David Hirsch.
David Hirsch: I am thrilled to be talking today with Chris Brewster of Waverly, New York, who’s the director at Brewster Marketing Solutions, the Father Engagement Coordinator for Parent to Parent in New York State, and the father of three, two whom have special needs. Chris, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Chris Brewster: Thanks for having me. It’s my pleasure.
David Hirsch: You and your wife Kristen, have been married for six years and are the proud parents of three: son Bowie 16, who has Angelman syndrome, daughter Ada 17, and son Seth 26, who has scleroderma, which is also known as short leg syndrome, autism, and more recently is undergoing gender transition. Let’s start with some background. Where did you grow up?
Chris Brewster: I grew up in Waverly. We actually are living in the house across the street from the house I grew up in where my dad still lives. So I’m one of those people who was raised here, left, and then came back and stayed.
David Hirsch: So my recollection was that you have a number of brothers. Where are you in the pecking order?
Chris Brewster: I do. I have four brothers. I am second. My oldest brother lives in Hilton Head, South Carolina. The next one, the next youngest to me is in Mount Kisco, New York north of New York City. Then the fourth one is in New Jersey and the youngest is in Connecticut.
David Hirsch: Okay, so you guys have all stayed on the East Coast.
Chris Brewster: For the most part. My oldest brother has lived in Texas. He’s lived in Chicago. He’s moved to South Carolina to be close to his oldest and his soon to be five grandchildren.
David Hirsch: Oh my. Okay. That’s exciting. Speaking of parenting, I’m wondering what did your dad do for a living?
Chris Brewster: He was a history teacher at the local high school for 30 years.
David Hirsch: Does he still live in the house across the street?
Chris Brewster: He does. Just turned 89 in August. Still out cleaning the sidewalk and mowing the lawn and doing all the things around the house that he doesn’t let me help him with.
David Hirsch: That maybe has contributed to his longevity, right? That he’s out there staying healthy and exercising and keeping up with things.
Chris Brewster: It absolutely has. He actually still volunteers at least three days a week in addition to what he does with his church.
David Hirsch: What type of volunteering does he do?
Chris Brewster: He runs the local food pantry and he helps in the office with a local church organization that helps to collect and distribute furniture to people who need it.
David Hirsch: That’s fabulous. So I’m curious to know, how would you describe your relationship with your dad?
Chris Brewster: Better now. My dad is very quiet. I grew up in a household where my mom was the boss. She was the one who established the discipline and let my dad mete it out. She was the one who was more boisterous and outgoing. My dad was always very quiet, serious, matter of fact. As he’s gotten older, my mom passed about 12 years ago, but as he’s gotten older and I’ve gotten to know him better from just the proximity and close relationship, he’s funny. He’s a very interesting guy.
He’s incredibly smart. Being a history teacher, he is a history buff, he reads constantly, so it’s very interesting to have conversations with him. My parents were both very active politically. When I was growing up that was something that I always had around me and he’s still very interested in that. I think some of that is from the history and some of it is just, he is interested in current events as well. So he’s sharp as tack, and it’s great to be able to still have those conversations with him at almost 90. He’s a little slower physically. He gets around a little bit less quickly than he did, but as far as mentally he’s still right there and it’s great to see.
David Hirsch: That’s fabulous. When you think about your dad, I’m wondering if there’s an important takeaway or two, lesson learned, that comes to mind?
Chris Brewster: He was very, like I said, because he was quiet and because he really deferred to my mom a lot, the things he would say would maybe carry a little bit more weight, if that makes sense. Because when people don’t say as much, when they do finally speak you maybe pay attention a little bit more. He was very encouraging in his own way. They both were. When I would get good grades, I wouldn’t get a pat on the back and a congratulations, great job. It was always a, we knew you had it in you, what took you so long type of reaction. [laughing] And so they were very much on the type who wanted us… I feel like the best way to say it is they wanted us to be self-motivated. They wanted us to not necessarily need their or anyone else’s approval for the things that we do. And to recognize ourselves, that our strengths and our abilities to do whatwe need to do. And I feel like that’s, that was effective, with both of them. I feel like that did help with all of us in really pushing some independence.
David Hirsch: Yeah. If I can paraphrase, I think what you’ve said is that they had high expectations for you, so that you’d reach your full potential. And I had this sort of thought that I haven’t had for decades. But there was a tagline for an investment company called EF Hutton, and the tagline was, when EF Hutton speaks, everyone listens. So they weren’t putting out messages all the time. The messages were far and few between so you paid attention. And what I heard you saying is that your dad might not have been overly verbal, but when he did talk, you paid attention to what he had to say.
Chris Brewster: Yeah, I would say that’s accurate. Yes.
David Hirsch: So I’m thinking about the education. You took an associate’s degree from Corning Community College and then a BS in communications from State University of New York at Brockport. Where was your career pointing as a young guy?
Chris Brewster: I actually went to University of Buffalo for first two and a half years of my college. And my plan initially was that I was gonna be a lawyer. Oh, it was one of these, well I’m good at arguing. I’m good at talking. Why would I not do something like that. What kind of nipped that in the bud was going to a school with 30,000 students and everything being open until 4:00 in the morning and being away from home for the first time and having way too many distractions and that was not conducive [laughing] to law school grades. We’ll put it that way.
I had been writing for my local newspaper covering sports since I was a junior in high school. It was something that I was good at. I didn’t really realize until I was older that it’s not something everyone’s good at. It’s actually a skill that a lot of people don’t have. And so at that point I decided that I might as well do something that I enjoy, that I’m good at and that I can get paid for.
I started out in my newspaper career covering sports and did a little bit of everything until I got out of that and moved more into the kind of the marketing PR end of things.
David Hirsch: Excellent. So I’m curious to know how did you and Kristen meet?
Chris Brewster: She was a clerk at the local library that I was the director of for six and a half years. So she was technically an employee. Yeah, it was one of those.
David Hirsch: Okay.
Chris Brewster: One of those that you hear about, a workplace romance things.
David Hirsch: I love it. I think that’s oftentimes where, if you don’t meet somebody in school, it seems more likely that you’re gonna get to know somebody through what you spend most of your time at, work and volunteering.
So let’s switch gears and talk about special needs, first on a personal level and then beyond. Since you have a couple of kids that have different abilities, I thought we’d talk about them individually as opposed to as a group. Let’s start with Seth, who’s 26. And I’m wondering, before Seth’s situation or diagnosis, did you and your first wife have any exposure to the special needs community?
Chris Brewster: I had none at all. Nobody in my family that I knew of, nobody in my close circle that had either any special needs or had kids with special needs at that point. So when we got the diagnosis of scleroderma, started out as a kind of like a rash on his… I’ll explain. If I do slip pronouns, I will try my best. But Seth was born Rachel and is currently starting to transition to male and prefers to be referred to as Seth. I’m proud of him and his journey and his struggle that it’s been and will be for him. And it takes a very strong person to do that. And so I honor and respect that and try as much as I can to keep the pronouns straight.
But yeah. When he was about two and a half, we noticed a hardening hard spot that we went to dermatologists and they actually had somebody that we saw locally who had seen this in textbooks when he was in medical school. So he referred us to another hospital. They took a skin graft and they diagnosed his scleroderma.
Typically, scleroderma can present itself one of two ways, and in him it was an exterior one, which is the hardening of tissue. On one of his legs, the tissue got really hard. The growth stopped. His one leg is about an inch and a half shorter than the other one. His foot is about two sizes smaller. So there are some, definitely some physical difficulties that he went through from a very young age.
He still has a lift put on the bottom of one shoe so he can have that evening of his stride. But, it’s the lack of strength in one leg versus the other and how just that uneven walking affects hip and knee and things like that. So it’s nothing that he really would talk much about, but definitely a physical pain threshold that, again as I’m getting older and aches and pains from years of sports. I can feel it a little bit, but I can’t imagine growing up with that constantly. That was something that he really just powered through.
David Hirsch: So is there a treatment for scleroderma or is it just something you have to make adjustments for? Like you were saying, if one leg is longer than the other, the lift, if it’s different shoe sizes, unfortunately it sounds like you have to buy two pairs of shoes, right?
Chris Brewster: Yeah, it’s both really. Outside of doing surgery and putting a metal rod in his leg to lengthen it to the size of the other one, or cutting the tendon in his foot to uncurl the toes that had gotten curled in because they hadn’t grown in sufficiently, there’s nothing you can do for that.
Now, typically, juvenile scleroderma, like what he had is pretty much by the age of 12 or 13, it’s run its course. It’s not gonna get any worse. And that’s right about the age, I think he was about 13 when we were able to stop. But there’s a steroid treatment. He took steroids for a while and then there was another medication that he took as well that was supposed to do a little bit of a immunosuppressant to keep that disease from spreading.
And I don’t know I’m assuming it did what it was supposed to because after the initial issues, it really didn’t get worse. It just hung on there until it cleared up. But unfortunately at that point, the damage was done in terms of what it did to his leg, what it did to the foot. And then just the musculature and even the fat. It’s the bottom half of his left leg is pretty much skin and bone. That’s just the insidiousness of some of these diseases is it’s just, it leaves the after effects and you just never know what it’s gonna do.
David Hirsch: Yeah. Thanks for sharing. And where did the autism diagnosis come in?
Chris Brewster: I think it’s something that’s always been there. There’s been some serious anxiety issues. His senior year of high school he did online because just the noise and the chaos of being in the school atmosphere was too much for him to really deal with and his grades suffered from that. And I feel like those two things were probably interrelated the entire time. But I think because they knew that there was anxiety, there was no real push to go deeper to see if there was something else there. So that’s pretty recent. I think that’s within probably the last couple of years that he let me know that his therapist had decided that there was also an autism component to that.
David Hirsch: Yeah. It’s not unusual that autism is not diagnosed at age two or three. Many adults are coming to the realization that they have certain traits that would be associated with autism or just a straight up diagnosis of autism. It’s not like you take a pill or you do something and it goes away. It’s not a disease, right? It’s just part of who you are. And I got schooled a little bit more recently. We’ve always been taught, at least I’ve always been taught to use the person-first language in the world of disability. I was talking with Dr. Eric Bendrick. He said, “I’m an autistic man, not a man with autism.” I said, “Doesn’t that go against the sort of rule of thumb, about person-first language?” And he said that might be the case with other afflictions. But he’s done a lot of research with adults with autism, and he says that 80% of adults with autism prefer to be referred to as an autistic person, not a person with autism.
So I’m like, Okay. I think it’s just a refresher that you need to understand what somebody’s preference is, right? And make sure that you’re not being offensive and listening to who they are and what’s important to them. And like you said earlier, I’m gonna try to get the pronouns straight. So you want to be respectful. That’s what I think I heard you saying, so that you’re being consistent in your reference to who you’re talking about.
Chris Brewster: And I think there does tend to be a tendency in a lot of cases where people don’t, they don’t go to the source. The best way to find out how certain people feel about certain things is to ask them, no matter what it is. And I think people just, I don’t know if it’s, they don’t feel comfortable doing that. You don’t want to go up to somebody and say, “What am I supposed to call you? What do you prefer I call you?” Right down to it. Grassroots. That’s the best way to find out how to do that without offending or saying something that you shouldn’t say. It’s good that there are people out there who feel comfortable enough with that to say no. I would prefer that you refer to me that way.
David Hirsch: Yeah. I think I’ve heard it said it’s the JAT philosophy. It’s the Just Ask Them philosophy, [laughing] which you just have to be a little bit more intentional when you’re having a conversation with somebody.
What’s been Seth’s greatest challenge?
Chris Brewster: It’s hard to say, and I don’t know really where it comes from. I think it’s just been… lack of direction, isn’t the right term. Never been comfortable in school. It’s never been an atmosphere or anything that he’s felt like that’s his place. So he’s really struggled with now that he’s outta school, what’s next? And bounce from job to job. And there’s certain things that are easier for him to do based on the physical limitations. He had a position that he liked with a company he liked, but he needed to be on his feet and eventually it just wasn’t gonna work. And so he had to leave that and he was very disappointed with that.
And I think that’s really been the main thing is just finding the fit, and that might be part of, we’ve not had this conversation in detail. He actually lives in Texas, so we talk on the phone, we text. I haven’t seen him in three years, I think just before the pandemic, so a little bit longer. I would think that might be part of the gender reassignment and feeling comfortable with himself. I don’t get the sense that he’s ever really felt comfortable with who he is or what his place is. And so I think he is looking at this at least as an opportunity to maybe feel a little bit more this is who I am, and maybe once I get this part straightened out, the rest will fall into place.
And we do everything we can from our end to help. But again, we’re half a country away and it’s difficult sometimes to really help with a lot of that stuff. But I’m hoping that… he’s very enthusiastic about it and it seemed to be something that he’s really passionate about making this step and doing this. Nothing bad from that. That’s all just the fact that he’s got himself in a place where he feels that good about it. Hopefully that translates to other things that maybe he struggled with a little bit.
David Hirsch: Yeah. Thanks for being so open and transparent about that. I think a lot of young people… It has nothing to do with gender transition or autism or scleroderma specifically, even though those are things that you made reference to. But I think that individuals, young and old for that matter, are concerned with their identity. Where do I fit in or what do other people think? And, that’s human nature, right? That’s not a diagnosis. That’s just being human and I think the sooner that we can each get to a point where we feel like we’re in a good place and comfortable with who we are, maybe we’re less concerned with what other people think or what other people say for that matter.
But that’s easier to say than do. And I think what I hear you saying is that you might not have seen each other recently. It’s super important to keep those lines of communication open, and whether it’s by text or zoom or phone or whatever means of communication you have, I think that that’s just critically important in the circumstance.
Chris Brewster: It is, and it’s always something with him. We split when he was four. And up until I think 17, he was either with his mom half the time, with me half the time. And then at that point he was with me full-time until he moved to Texas. So he was with me full-time for about four years and we’ve always had very close relationship.
Various reasons that we don’t really need to get into that he butted head with his mom a little bit, and there was some friction there when he was younger that fortunately at this point seems to have resolved itself. But I was a single parent for a long time with him, and I hope that I helped to bring some stability to what was going on and to help him at least a little bit with some difficult things because it’s hard.
Life is hard and especially when you don’t feel like you necessarily fit in, like you said, it’s hard at whatever age you’re at until you really get to a place where you feel comfortable in your own skin to say, this is who I am. And not identify yourself by your job. You’re gonna be known in your circle, your family, your friends, and how do you wanna be known is not necessarily by what job you did, but that you were a good friend, that you were a good brother, that you were a good parent.
It’s just, it’s finding whatever that is that makes you feel good about yourself and identifying that way. And that’s not easy for any age. Everyone struggles with that.
David Hirsch: Absolutely. Let’s switch gears and talk about Bowie. So what is Bowie’s diagnosis and how did it come about?
Chris Brewster: Bowie has Angelman syndrome, which is a genetic disorder, a chromosomal thing. There is a chromosome that is dormant on the father’s side, and if it’s missing on the mother’s side, then they just don’t have it. There’s been some research to try to see if there’s a way to restore that, either from turning it on the father’s side or from adding it, but it leads to developmental delays, motor skills issues, different levels obviously like there is for anything. Bowie does say a few words, but he’s technically non-verbal. He can walk, but it’s not easy for him to do and especially not for long distances. Sleep is hard and impulse control really doesn’t exist. There’s no fear. Sticking your hand in a hot pan isn’t something that’s gonna, you’re gonna think I’m gonna burn myself. You just wanna grab the food out of there. Or jumping in the water without life vest or somebody there to watch you. It’s just, you wanna get in the water. So in a lot of respects, it’s like dealing with a 3-year-old who in our case is 5’3″ and weighs 110 pounds, which you know when he’s bigger than his mom that presents its own issues.
But he was diagnosed at about two and a half. He was having seizures. He was having seizures. They were having a difficult time diagnosing it locally. So his mom and her parents took him to a larger hospital and they were able to diagnose to a level where they did genetics, some genetic testing. And they came up with a, with an Angelman deletion positive is the designation for that.
David Hirsch: So you mentioned that Bowie is technically non-verbal, limited mobility. Some of the challenges include sleep, and then just the sort of craziness that goes on without a full understanding or appreciation for the danger or fear that we build up just from our experience. What have been the greatest challenges to being a parent of somebody with Angelman?
Chris Brewster: It’s, for me, honestly, it was getting educated on what exactly it was that we were gonna be dealing with day to day. Which it’s easy to say, but impossible to do because it changes every day. There’s no stability, it’s something different. It’s a different behavior or a different version of behavior almost every day. When his mom and I met and started seeing each other, I knew what he was like. I knew his diagnosis. I’d been around him some. But there’s a difference between seeing somebody and he’s cute, he’s giving you hugs, he’s kissing you. And then when you’re living with it every day, and he’s not sleeping, he’s throwing his food around, he’s having yelling fits, he’s… When we first started seeing each other and then moved in together, and when I was around Bowie before we got married, he was maybe 60, 65 pounds. And he’s 50 pounds heavier than that now. So at that point, if we needed him someplace and he didn’t wanna go, we’d just pick him up and carry him. That’s not really gonna happen now. I’m six two and I weigh 185 pounds and I’m pretty solid. But I’m still not picking up a 5′ 3″ 115 pound kid very easily and getting him someplace. It just doesn’t happen.
So I think to answer the question simply, it’s a complex question, but I guess the simplest answer I can give is we need to anticipate everything that we know he might do and everything that we don’t know he might do. We need to be prepared for any behavior that could come about. Take him to a restaurant, he could be perfect and sit and eat his food and, or he could slide down under the table and refuse to come out because he doesn’t wanna be there anymore. We never know. And it could be something in between. So we need to be prepared. I guess we, we’d say, prepare for the worst and then hopefully we’re surprised. An easy way to go through just day-to-day life but that’s what we get.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.
Chris Brewster: In a lot of cases it’s impulse control. At a certain point everybody learns impulse control and they learn appropriate behavior for their environment and he’s not able to do that. So what we might see as being well, how come he doesn’t understand that when he’s here he can’t do that? It’s because he’s not able to. Even knowing that, and even being around him every day, you still sometimes things happen where you’re just amazed that it’s just one more thing that you didn’t realize that it just, he just has no concept. And it’s not his fault. He just doesn’t, and it’s hard.
That’s the other thing too, I think is just you learn, like we all do when we’re dealing with kids in general, but when we’re dealing with people with special needs is you learn infinite patience. Or hopefully you learn infinite patience. It’s harder sometimes than others. It’s just the understanding that even though things that he’s doing that may seem defiant or may seem like he’s just picking on you, he’s just doing things to get a rise out of you are things that he just has no control over. And so to remind yourself of that in the heat of the moment and react appropriately is not always the easiest thing in the world. And we all struggle with those things sometimes, and it’s unfortunate, but we get better.
David Hirsch: Yeah. Thanks for your authenticity. Has there been some meaningful advice that you’ve gotten along the way as far as raising a child with Angelman?
Chris Brewster: There are two very active organizations, advocacy organizations and organizations that help to fundraise for drug trials and things like that, as well. One of them is Angelman Syndrome Foundation, ASF, and the other one is the acronym is FAST, it’s Foundation for Angelman Syndrome Therapeutics.
And FAST at that point was holding an information seminar and as it became referred to as “adult prom” every year in Chicago. And two months after Kristen and I started living together and I was seeing him every day, they had one of those in Chicago in December. And so I went with her and got a chance to meet a lot of people that she’d met through those seminars and online and just to see other kids, there were people that would bring their kids, so you’d see other kids. You’d see older kids and see how they behave. You’d see younger kids. And just to see the difference in how the behavior was and then to talk to the other parents. I didn’t know anybody in that world. And to get to meet so many other parents from all over, not just this country, but all over the world, who had come to learn about what was going on, to learn science, to learn what’s happening with drug trials and then to just kinda get together and cut loose for an evening.
It was incredibly helpful and still is, all these years later, to know that there was a community out there with both organizations. ASF especially now, where if you need something, if you have questions about something, you can reach out to somebody or you can post something on a Facebook page and somebody has gone through that at some point.
And just the wealth of experience and the willingness of people to share that with others has been incredible and nothing that I would’ve anticipated was out there for something that affects one in 15 to 20,000. So just the fact that you’ve got this condition that’s so uncommon, but you’ve so many people who are willing and able to share their knowledge and their information and their insight is pretty amazing.
David Hirsch: Yeah. It does sound like a blessing to be able to connect with other parents and have that resource, right? So you’re not trying to figure out things on your own and don’t feel as isolated as you might otherwise. When I think about rare disease like Angelmens, it doesn’t affect that many people. One out of 20,000 or whatever the number is. We’re so much better off today in the information age where that information is at your fingertips and you can be in contact with people, like you said, not just locally. Virtually anywhere around the country, around the world versus what it would’ve been 20 years ago, pre-iPhone, pre Google this, Google that. It was a much more daunting task. And that’s not to say that it’s easy, right? I’m not trying to candy coat something. If you can put the timeframe in perspective, you know what a blessing it is to have all this information and these connections literally at your fingertips.
Chris Brewster: Yeah. Yeah. And I think, the more you wanna seek it out, the more you can find. You can dig as deep as you need to and you can find people who are experts on this and who can give you the information that you need and are willing to do that. We do have friends who have kids who I call ’em kids who are in their twenties and thirties, and it’s exactly that. They went through, even Kristen, when Bowie was first diagnosed, that would’ve been 13 years ago. There was not the information or the availability of the information was not there like it is now. So it’s just leaps and bounds even in the six years, six and a half years that I’ve lived it, it’s much more prevalent and much more easy to find that information than it used to be.
And I don’t know what I would’ve done in my situation without having those resources. I can’t imagine being a parent 15 years ago and having, getting the diagnosis and just not even knowing where to go or what to do.
David Hirsch: Absolutely. So I’m curious to know what impact has Bowie’s situation had on Ada, your marriage or the extended family for that matter?
Chris Brewster: It’s been different. It’s definitely been different on my family especially. My family’s been incredibly accepting and I knew they would be. My family’s… I’m lucky to have the family that I do. And they’ve been very welcoming. They’re very patient with him. They’ve been very accepting of the situation.
And Ada deals with, she’s a 17 year old girl and she’s got her own things, but she’s very patient with him. She deals very well with him. They’re in the same school together. Ada’s in her senior year, Bowie is a sophomore. They’re in the same school. They see each other. They both are in chorus. And so she sees him every day and she sees him differently and her friends see him. And she never acts like embarrassed to have him as her brother or tries to ignore him or anything else. They know him, they know her, they know what he is like, and she just kinda laughs it off and just keeps plowing through.
As far as the marriage, my, I tell my wife, she’s the strongest tiny person I’ve ever met, and I don’t mean that just physically because of having to move him around, but also just, she’s just mentally, she’s dealt with so much and she continues to do it with, it’s not always easy and you have your breakdown sometimes.
She goes through it every day like a champ. And is as supportive and loving and helpful to him as he needs her to be. And it’s incredible. It’s incredible to see that. I never have a doubt for one second that I made the right choice with the family and with her.
David Hirsch: Yeah. Thanks for mentioning that you did come into the relationship, right? So it takes a special type of person, dad to come into a stepfather relationship knowing that there’s a child with special needs. So I admire you from that perspective. And it sounds like, if I can paraphrase what you were saying about Ada and about Kristen, these are some really strong women that are rock solid and you guys are getting something right.
Even though I’m sure I’m reading between the lines, there’s challenges on a day-to-day basis. You have to be able to look back every once in a while and say, we might not be on top of our game a hundred percent of the time, but you’re raising some really fine human beings.
So I’d like to switch gears and talk about special needs beyond your own family experience. I’m curious to know how did you get involved with Parent to Parent and what does Parent to Parent do?.
Chris Brewster: I started working with Parent to Parent almost four years ago. It’s tough for a lot of dads, as most of your guests in the past I’m sure have attested. It’s hard, because we’re guys, to necessarily find another guy that says… that gets it. So as part of what I do, we started a support group online. It’s every two weeks. And it’s just guys who, they might get on because they wanna talk about some milestone that their kid hit, or they’re feeling down because something happened and they were, are looking for some encouragement, or they’re having a hard time getting a certain service through the state. Does anybody know who they can go to? Does anybody have any resources? Just things like that. Or it could just be, has your kid ever done this? What do you do when that happens? So there’s a lot of information sharing. There’s a lot. It’s just, it’s whatever they wanna talk about, which is really nice.
And I think that’s one of the reasons that it’s been successful is we’ve created a format where you can come on and say as much or as little as you want to. You can ask questions, or you can sit back and listen and you can interject when you want to. But we’re not pushing anything. We’re not requiring anything from anybody, and people don’t have to participate if they don’t want to.
It’s getting to a comfort level to where you feel like you belong and you’re comfortable with the group. And so we don’t get too many people who come on and don’t participate. And if they do, it’s for the first half hour that they’re on and then usually they’ll have a question or they’ll have something to interject. And a lot of the ones who have come on and say I didn’t wanna do this because I was afraid it was gonna be touchy feely and therapy and everything else, end up being the ones who tell us after their first time that they got so much out of it. It was so great. It’s not what they expected at all. And we’ll see you in two weeks. It’s great. It’s nice to see that satisfaction. It’s nice to know that what you’re doing is having a positive impact on people.
David Hirsch: Yeah. Thanks for talking about the father engagement work that Parent to Parent does. So I’m thinking about advice now and I’m wondering if there’s any advice that you’d like to share?
Chris Brewster: I think just being open, being open and accepting to the fact that just because your journey and your path as a father is not necessarily what you had thought it would be, doesn’t mean that it can’t be incredibly gratifying and satisfying. It’s different things. With our kids in a lot of ways we learn, I think we learn to appreciate baby steps. The first time a neurotypical kid walks it’s a milestone. It’s amazing. But if you have a kid who’s not mobile and they walk for the first time at four and they were maybe told by their doctor, they were never gonna walk, that’s just so much more of an achievement that it’s hard to really wrap your head around that. Somebody told you were never gonna be able to do something and now you’re doing it. That’s amazing. And just, I guess just having that perspective of not every celebration has to be a huge one. Learn to celebrate the small things. Learn to celebrate the smaller milestones and you’ll get just as much gratification, satisfaction out of that.
David Hirsch: That’s great advice. So I’m curious to know why is it you agreed to be a mentor father as part of the Special Fathers Network?
Chris Brewster: I feel like I have a unique perspective, almost an outsider perspective, because when I did come into my marriage and being a stepdad, I knew what was going on. I came into it with my eyes open. There was no surprise diagnosis. I knew what was there. That’s given me a little bit different perspective in terms of looking at the research, trying to find out as much as I can about things, struggling with finding information and finding out as many details and as much about the diagnosis as I can.
Having gone through that, I feel like I can help others who might be struggling with the same difficulty, whether in my circumstance or not, just to know that there’s information out there, there’s resources out there, there’s other dads out there. Find your group, find your network, find the people who get it and to help them do that, whether it’s with me, whether it’s through Parent to Parent in New York State, or whether it’s in a larger context, just being there and being available for people in a way that there were so many people that were available there for me when I needed them.
David Hirsch: Yeah. We’re thrilled to have you. Thank you for being part of the network. Let’s give a special shout out to Louis Mendoza, formerly the executive director at the Washington State Fathers Network for helping connect us.
Chris Brewster: Absolutely.
David Hirsch: If somebody wants to learn more about Parent to Parent or contact you, what’s the best way to do that?
Chris Brewster: They can go on our website. It is www.ParentToParentNYS.org.
David Hirsch: We’ll be sure to include that and information about the ASF and FAST as well in the show notes. Chris, thank you for taking the time and many insights. As a reminder, Chris 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 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Chris, thanks again.
Chris Brewster: Thank you very much.
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”. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, 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.