201 – Duncan Keya of Nairobi, Kenya Father of Four Including a Daughter With Albinism & Son With Autism.

Our guest this week is Duncan Keya of Nairobi, Kenya, the father of four children and a Designated Migration Officer at the Canadian High Commission in Nairobi.
Duncan and his wife, wife, Faith, have been married for six years and are the proud parents of four children: Luka (5), who has Autism, Khalayi (2) who has Albinism and two other children: Keith (13) and Kaylee (6) from his first marriage.
Duncan has become an outspoken advocate for families raising children with all types of special healthcare needs and has helped start the SFN Nairobi Dads Meetup Group.
It’s a very compelling story all here on the SFN Dad To Dad Podcast.
Kenya Autism Alliance – http://www.kenyaautismalliance.org
Albinism Society of Kenya Website – https://albinismsocietyofkenya.org/blog/blog-2/
Positive Exposures Kenya website – http://www.positiveexposure-kenya.org
Email – duncan.keya@gmail.com
LinkedIn – https://www.linkedin.com/in/duncan-keya-03155729/
Transcript:
Tom Couch: To all dads raising a child with special needs, mark your calendar and plan to attend the Special Fathers Network Dad’s Virtual Conference Saturday May 14th. It’s a must attend event for dads looking to learn about the Special Fathers Network, to meet other dads, to gather resources, develop skills, and network with other like-minded dads.
Register today at 21stcenturydads.org. 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.
Duncan Keya: I want to change the narrative. I want to change the narrative about kids with special needs. We actually don’t need the sympathy. We just need you to understand us and accommodate us, and just know that we have challenges, the same challenges you have, but some of our challenges are just different.
We are not looking for all the sympathy that is out there. We are just trying to be fathers, be mothers, and be parents to kids with special needs.
Tom Couch: That’s our guest this week, Duncan Keya from Nairobi, Kenya. Duncan has four children, including Luka, who’s autistic, and Khalayi, who has Albinism. We’ll hear about Duncan’s life and about how he’s helping fathers in Africa communicate better with one another.
His is an interesting story, and we’ll hear it on this Special Fathers Network Dad to Dad Podcast. Say hello now to 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: Now let’s listen to this discussion between Duncan Keya and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Duncan Keya of Nairobi, Kenya, the father of four children, who works as a designated migration officer at the Canadian High Commission in Nairobi. Duncan, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Duncan Keya: Thank you, David for the opportunity.
David Hirsch: You and your wife Faith have been married for six years and are the proud parents of four children, Luka, 5, who has autism, and Khalayi, 2, who has Albinism, as well as Keith, who’s 13, and Kaylee, 6, from another relationship. Let’s start with some background. Where did you grow up? Tell me something about your family.
Duncan Keya: So I grew up in Nairobi, Kenya. Born and raised in Nairobi, Kenya. Born to basically a single woman, because by the time I was born, my biological father and mother had separated. So I come from a family of three. In terms of four siblings, I am the last one. I have a big sister called Linda, Steven, who follows my big sister, and then me.
In terms of the larger family, I have other half siblings. I was brought up in a family basically by my maternal uncle. So brought up in a very large family, a polygamous family. So basically I can say I have a lot of half-siblings, like countless half siblings.
David Hirsch: When you say countless, there’s how many, just to be clear.
Duncan Keya: Okay, so biological half siblings, I have around four. My cousins, who were brought up in the same household, who I consider my siblings, the number ranges I would say above 15 in 20 years.
David Hirsch: Okay, so there might be 20 in total, when you get everybody together. And we’re going to talk about the man that raised you. This is your maternal uncle. And I’m sort of curious to know, what did he do for a living?
Duncan Keya: He was a civil servant. He worked for the government. He was a senior civil servant. So this is the man I grew up calling Dad. This is the first man in my life. Never called him anything else than Daddy.
David Hirsch: And how would you describe your relationship with your dad?
Duncan Keya: It was, I would want to think the best relationship I’ve had with a father figure, because he took me in as his son, loved me with all the care that he could, spent a lot of time with me, actually, especially weekends. I would take him to the gym and I would hang around, and just bond as father and son.
David Hirsch: Excellent. So when you think about that relationship, are there any important takeaways, lessons that you learned, things that perhaps you’re incorporating into your own fathering?
Duncan Keya: He had a big heart. This man had a big heart. He was quite generous. He never shied away from helping strangers, relatives, anyone. He had a big heart. He was loving. He was strict when he needed to be strict. He was very particular about education, really was interested in all our progress in school. So he’s a man who was polygamous, but I could say he was in touch and followed up on all his children’s progress in school. School was very important to him. And he was he was a jovial person. He was ever smiling. I would say losing him was my first greatest heartbreak.
David Hirsch: Yeah. Well thanks for sharing. And if he was responsible for raising 15 to 20 children, there must have been a competition for getting his attention or doing things with him. At least that’s the perception.
Duncan Keya: Yeah. I don’t know how he managed to handle all that, but he found a way to balance. I don’t think all my siblings would agree with me, but yeah, he tried his best. He was not a perfect man. As I grow older, I realize some of his faults, but I appreciate that he tried the best that he could.
He had his own inadequacies, and he was not the angel that we grew up thinking, because when you look at some of his failings, there are things he would’ve done better. But he did his level best.
David Hirsch: Yeah, well, you make a good point. You know, we all have our failings, our strengths and weaknesses. And when you’re growing up, your mom and your dad are bigger than life. They’re two or three times your size physically. And then when you grow up and you’re an adult, you’re sometimes the same size, a little shorter, a little taller, and you’re looking at them from a different perspective. Physically looking at them from a different perspective and then literally looking at them from a different perspective, because now you have an understanding or perspective about what’s going on, which you might not have as a youth. So thank you for making that point.
And I’m wondering if there were any other men that played an important role in your life.
Duncan Keya: I would want to mention my biological father. Because at the end of the day, as much as we connected later on in life, he made his mistakes as a man, but he made a point of reconnecting with us as his children, and we had a bond before he passed on. He was a jovial guy. Very jovial guy. Very charming. Very charming. I now understand how my mother fell in love with him.
The other biggest father figure in my life is actually my big brother, whom I still consider as my father. I consult him with any life-changing decision that I make. Most of our friends or relatives think we have a weird kind of relationship, because he’s a father figure, yes, but we are best friends. You ask me who’s my best friend, I’ll tell you, my brother is my best friend. So I grew up with him. He basically raised me once my father passed on. He paid for my tuition. He has been there for me for as long as I can remember as a father figure.
David Hirsch: Yeah. Well, thank God for Stephen, I think you mentioned is his name, and the role that he has played in your life. So my recollection was that after high school, you went to Russia for four years and you studied Russian languages and obtained a bachelor’s degree in airframe mechanics and aircraft maintenance.
And then from there, from an educational standpoint, you spent two years in Malaysia at the INTI International College in Nala, Malaysia, where you earned a Bachelor of Arts degree in political science. And then from there, because that wasn’t enough education apparently, you spent four years at the African Nazarene University, where you earned a Bachelor of Arts degree in peace studies and conflict resolution.
And my recollection was that your career started at a couple of different companies, banking organizations, Barclays Card and NIC Bank. And after your studies in Moscow and Malaysia, you worked at Capital Investments Consultants in UNHCR, and then while you were going to school at African Nazarene University, you worked as a case officer at the Australian High Commission. And you were there for maybe six years. Then since February of 2020, you’ve been a designated migration officer at the Canadian High Commission doing similar work that you were doing for the Australian government.
Duncan Keya: Yes. That is accurate. You’ve basically nailed down my career path.
David Hirsch: Well, thank you for verifying that. And I’m sort of curious to know, what is it that a designated migration officer does at the Canadian High Commission?
Duncan Keya: Basically I make decisions in terms of visa application decisions, so for temporary entry or for permanent residency. So basically as a designated migration officer, I’m designated to make decisions that allow people to visit Canada.
David Hirsch: So just to be clear, these are people leaving Kenya and going to Canada, right?
Duncan Keya: Yes.
David Hirsch: So my recollection was that Faith also worked for the Australian government, but she arrived there after you were there and you shared a very interesting insight about African marriages. And it had to do around the issue of dowry.
Duncan Keya: Yeah.
David Hirsch: If it exists in the United States, I’m not aware of it. So I’m wondering, for our listeners’ benefit—because this is part of learning about different cultures—I’m wondering if you can explain the concept, and then more specifically what was involved in your own situation.
Duncan Keya: I’ll talk about Kenyan culture and my tribe’s culture. So I met my wife while we were actually in the midst of dowry negotiations for my cousin, so my cousin is married to my wife’s sister.
Dowry is basically a token of appreciation that you give to the girl’s family for raising for raising her. So it’s basically supposed to be symbolic, but it depends on the culture. It depends on the tribe. It depends on the family, because some families can demand more than what is expected. Then some families can refuse to take dowry. So that is how I met her. But she was of course in the function, and so yes, I have paid dowry for my wife. I might have gotten a discount because my cousin is married to her sister.
David Hirsch: So just for my own clarification, are we talking about monetary things or non-monetary things that are included in the dowry?
Duncan Keya: It can be a mixture of both. Because in my culture it’s equated to cows. So you can put a price tag and say, “We’ll value a cow at X amount. So you either give us the physical cows, or you give us money worth X cows.”
David Hirsch: Is there anything other than a cow or money that would be included in the dowry, or is it really limited to those two things?
Duncan Keya: For my culture, it is normally not only limited to that. You can bring gifts to the aunties of the girl. You bring for them fabric, anything to soften their hearts for them to allow you to marry their daughter.
David Hirsch: That’s an interesting process. So thank you for shedding a little light on that.
I’d like to switch gears and talk about special needs. First we’ll talk about Luka. And then we’ll talk about your daughter. So, prior to Luka’s diagnosis, did you or Faith have any exposure to this world of special needs?
Duncan Keya: To be honest, we had not encountered a child with autism per se. I had encountered in the public, but not anyone we knew that close.
And growing up, as I said, I grew up in a very large household. I had a cousin with Albinism. So that is basically the special needs part that I knew. For my my mom, while she was growing up, she got a bout of polio, so polio affected one of her legs, so she’s crippled in one of her legs.
But that to me was never a special need, because that’s my mother. I never saw it as a special need, because she was all over the place trying to feed us and make life easy for us. So I would speak for myself. I had never intimately interacted with a child with special needs.
David Hirsch: Okay, so what is Luka’s diagnosis and how did that come about?
Duncan Keya: So Luka gets born. We’re excited as parents. This is our first child. He was a curious boy, very inquisitive, very particular about how he wants things done. Very particular about his diet. Such things were not raising any concern for us, because we were first time parents, so to us it was, “Oh, this child is just special.”
One of the things we noticed early on is Luka never used to put anything in his mouth. It is expected as a child, children keep putting things in their mouth. And we would tell people, “Oh, our Luka never puts anything in his mouth.
By age two, we are noticing that Luka is not forming sentences, he’s not talking, he’s not having the milestones that kids his age are having. But in our heads, no need to panic, he’ll talk when he’ll talk. So we go to a birthday party when he was around three, and there’s this lady teacher who asks us if we have taken Luka to see any specialist.
So we ask her why, so she tells us, “Look, Luka is very special. Like he’s a special child. He’s actually gifted. You guys just don’t realize it.” So we question her. We are like, “Why would you think that? Or why would you say that?” So she points to where all the other children in the birthday party are having their faces painted and are on the bouncing castle, while Luka is in the other side of the field.
He’s fascinated with how rocks are interlocking. And he’s touching stones and trying to feel the ages of the stone. And he’s playing alone and in his own world. So that made us think we need to go to see a specialist. We didn’t know we were getting a diagnosis. Once we did all the tests, the neurodevelopment doctor asked us, “Does Luka sleep well? What are his sleeping patterns?”
And it hit us. We told him, “Luke never slept well. Throughout the night for the three years, he kept having meltdowns at night, waking up 3, 4, 5 times and would just be exhausted and tired the next day at work.” So she told us, “Look, that is one of the early signs of an autistic child. Does he get affected by noises?”
And we’re like, “Yeah. He keeps covering his ears when he hears some noises, or sometimes he seems to get overwhelmed when there’s a lot of noise around him.” And so she explained to us all that is sensory overload for him. So she confirmed to us. She was like, “Unfortunately, I need to tell you that your son is autistic. At the moment he’s low on the spectrum.”
It was shocking, yes, but it answered so many questions for my wife and me, because we kept asking ourselves, “Why is Luka like this?” And so I remember the doctor asking if she could give us a few moments to break down and cry. We were like, “No.” And she was like, “You’re the first couple who’s come into my room and are actually smiling and asking me more questions.”
So we told her, “Look, this is a revelation. We are now understanding our child, and it is good that we’ve come right now, because we would’ve continued assuming that there’s something wrong with him and not doing early intervention for him.” So that is how we found out that Luka had autism.
David Hirsch:
Yeah. Well, thank you for sharing. And maybe your reaction was a little bit different. Like you said, it wasn’t like devastating, even though it was shocking. You needed to know more. And this answered some questions, and there’s a sense of relief when you know what something is. So now you know what to do.
This is your first child, yours and Faith’s first child. I’m wondering, was there some meaningful advice that you got from therapists or doctors, anybody else for that matter, that helped you put this in perspective?
Duncan Keya: Yes. The doctor we saw was at a children’s hospital, and she suggested we change his diet, try and remove gluten, try and give him certain types of food.
But that was difficult for us, because anyone who knows autistic people, they’re very hell bent on their ways, and changing Luka’s diet has been the most difficult thing for us to do.
But she also signed us up for speech therapy and occupational therapy. He flatly refused to have occupational therapy. So, yeah, he used to break down, and it was a scene. And so one of the therapists was like, “Don’t force him. Let’s not force him, because it’ll do more harm than good.”
So we ended up majoring on speech therapy at the hospital. We did speech therapy for a while. It’s frustrating for a parent with an autistic child, because you want to see major milestones. You want to hear your child talk. You want to hear your child, say, “Dad.” So you’re spending all this money and you’re getting nothing. And the therapist is telling you, “Oh, during the session he said, ‘Dad,’ or said ‘Mom,’ or said, ‘Cow.’” And you’re like, “Okay, why can’t he say the same to us?”
So we did it for quite some time, and then we decided to enroll him in school. And that now brings in another story. But those therapy sessions didn’t really bring the results that we wanted. Maybe we were impatient, I don’t know. But we had to change course after a series of events.
David Hirsch: Yeah. Well, thank you for being so open and transparent about that. So I think what I heard you say is that he had a difficult time changing his diet. He didn’t want to do any occupational therapy. And the speech therapy that you tried for months and months and months or years didn’t result in him being able to express himself verbally. So is he still nonverbal?
Duncan Keya: He’s still nonverbal. But there’s a lot of improvement in terms of how he’s socially interacting with us in the household and with people, because we changed, I would say service providers. We took him to a different center where they’re doing a combination of therapies. He’s now doing occupational therapy, speech therapy and behavioral therapy.
So there’s been a lot of improvement in terms of meltdowns, in terms of him just being calm and just trying to be the kid that he is. He’s still as curious as he was when he was young. He’s still very particular about his diet. But yeah, every day is a lesson for us. Every day is a lesson for us.
David Hirsch: Yeah. Well, thanks again for sharing. So, what was the school experience that you were just making reference to?
Duncan Keya: By the time he was reaching four, let’s say four and a half or four, we decided to enroll him in school. So we started looking for schools. And you want the best school for your child. You want your child to get the best education. So you are looking for the best school, the best system of education. So before enrolling him in the school, we said, “Look, our child is non-verbal, autistic, can be very hyper, might have meltdowns. Are you in a position to accommodate him?”
And the school is like, “Yes, of course we can. We have special needs teachers, we have teaching assistants, so don’t worry. Pay the tuition fee and register the child.” So we did that. Three or four days later, the school called us and actually asked us to withdraw our child from the school.
So in terms of raising Luka in this world, that was one of my lowest points, because that was clear discrimination for my child, and I had to get an advocate’s input on that. So we sent a demand letter to the school and threatened them with legal action. It was a big deal. It was all over in the news in Kenya, trended on Twitter, because the school had basically indicated that they were not going to give me any refund for the tuition fees that I had paid.
And all I was demanding for them from them is, “I want an apology, and please refund me the money that I paid, because you cannot tell me after three or four days that you are not refunding me.” So they ended up refunding the tuition fees, but I’ve never gotten an apology from them.
I decided to move away from confrontation with them, because when my story came out, parents started reaching out to me, parents with special needs kids. My story touched them, because it highlighted the challenges that parents in Kenya have in terms of their children being accommodated. They were very grateful for it.
So I decided that I’ll switch my conversation from trying to get my apology from the school to highlighting the challenges that parents are having in raising kids with special needs in the country.
David Hirsch: Well, I’m wondering if your degree in conflict resolution had anything to do with your ability to navigate this sort of slippery slope that you were just describing.
Duncan Keya: Yes, because, well, I would’ve gotten my apology, and then spend time in court. So I believe I taught the school a lesson, and they’re not going to do that to someone else.
But the conversation was bigger. The conversation is bigger. It’s not only about, Luka. And the apology was basically for me, not for Luka. So the conversation now needs to switch to Luka and all their other kids who have special needs and how are we fighting for them? How are we sensitizing the society? So to me, the apology doesn’t matter anymore.
David Hirsch: Yeah. Well, thank you for sharing. Sorry it was such a challenging or difficult experience. But like you said, maybe with some time and a different perspective, you can see some of the benefits that have occurred as a result. It’s not just about Luka, like you said, but there are other families, dozens, if not hundreds and hundreds of families, that are raising children with special needs there in Nairobi. And hopefully they won’t have that same bitter experience you’ve had and that their child will get the services they’re desirous of or that they need, so they can reach their full potential as well. I’ve heard it said before that there’s a purpose in the pain, this painful experience that your family has experienced. And maybe you’re reflecting on that with the comments that you made.
So I’m wondering, what supporting organizations have you been able to rely on, either as parents, or Luka, for that matter?
Duncan Keya: For Luka, the major one, I would say—and with Covid being there, no interactions with the outside world and all that—has been a Facebook group for Kenya Autism Alliance. I would say that that group has really come in handy in terms of parents just sharing their stories, parents talking openly and freely without fearing judgment. The group moderators and the people in the group just being there and helping. That is part of my support system.
My other support system is of course my family members. The major support system I have as a father is my wife. She’s the superwoman in all this. I don’t know what I’ll do without her. My siblings, her siblings, our friends, have all been part of the support system.
Once Luka’s story came out in the news, one of the government institutions reached out in terms of doing a needs based assessment for him, and they were very helpful. This is Kenya Institute for Special Needs Education. They did a needs evaluation with him in terms of telling us what he needs or giving us the documentation that we need to provide to schools when we are enrolling him. And if schools say they can provide what is in the document, they’re bound legally by the government to provide that.
So, as you said, some of the pain had its benefits. Basically that has been my close need support system. But I try to read a lot of articles in terms of raising children with special needs. I follow a lot of groups. There’s a guy in Dubai who does amazing work. He has a child, a son with special needs, I think it’s called [?], He does an amazing job and yeah, they’re quite inspirational stories. So that is how I cope.
David Hirsch: Yeah. Well, if I can paraphrase what you’ve said, the Kenya Autism Alliance, which also has a Facebook group, is a safe place for parents to come to learn from one another, share their stories without judgment, because you have something in common. And the Kenya Institution for Special Education has also helped by doing this needs assessment. Because once you have identified what your child’s needs are, then it’s been documented and there’s a requirement that those services need to be provided. So obviously that’s very instrumental.
So let’s switch gears and talk about Khalayi. What is Khalayi’s diagnosis, and how common is it?
Duncan Keya: It’s Albinism. Almost two years ago, Khalayi was born, and voila, she’s an albino. And I’m like, “Wow. What one man can take another dose of another kid with special needs.” So she has Albinism, and this affects pigmentation for her. Basically she lacks melanin. Which is not very shocking for me, because as I explained earlier, I have a cousin who’s an albino. Probably shocking for my wife, because for her, she doesn’t have anyone in her family who’s an albino.
But when you read about Albinism, both parents must have the gene for the child to have the gene. So maybe she doesn’t know generations back one of her family members was an albino.
So how common is it? Not very common, but also not very rare, especially in Africa. This part of Africa, there’s a lot of sensitization that has happened for Albinism and not other special needs like autism. Because it’s visible, people would look and say, that’s an albino. And we have prominent personalities in the country who are albino. So it’s not as rare as it used to be years ago.
But I can imagine, when my cousin was born around 50 years ago or so, that must have been a shocker and must have been traumatic for the family, because Kenya was not as developed as it is right now. There was no information on Albinism. So it must have been really tough on my aunt and the family.
David Hirsch: Well, thanks for sharing. And what I heard you say is that the situation’s improving. Albinism is more accepted, and people with Albinism are more included. And I think what you are referring to is that there’s a judge in parliament.
Duncan Keya: Yeah. In fact, she recently got promoted as a court of appeal judge. She’s a lady, which is good for my daughter because there’s a role model there. Then there’s a member of parliament who’s an albino, and very many other personalities who are albinos and doing quite well, living their life normally.
So I’m raising a feisty young girl and telling her, “There’s nothing wrong with you—you just lack melanin. So just put on some sunscreen and you’ll be okay.”
David Hirsch: Yeah. Well, it’s, a different situation, like you were describing. It’s something that’s visible. And it doesn’t impact her intellectual ability. It has more to do with the pigmentation of her skin, her eyes, her hair, and it’s all circumstantial, right? It’s not like Albinism is one thing. The one thing I guess is common is that they have a lighter pigmentation. And I think you mentioned in a prior conversation, it varies by country. So Kenya is more progressive than some of the other African countries.
Duncan Keya: Yes. Kenya is quite ahead, if you look at Eastern Africa, in terms of accepting. Because there’s a lot of stigma associated with Albinism. So if you have body parts from someone with Albinism, and you use them for black magic or do these traditional things, you become prosperous. So people with Albinism in some of the neighboring countries actually take refuge in Kenya, because in those countries, you’ll get kidnapped and killed for your body parts, basically.
David Hirsch: Oh, my gosh, that sounds very barbaric.
Duncan Keya: It is barbaric. So it goes to cultural beliefs, and nothing scientific has ever been proven that if you take a body part of someone with Albinism, you’ll become rich or successful.
But it doesn’t happen here, because the laws are very clear and the society is more progressive. Our neighboring countries are having a challenge. But I can see the issues are being addressed, and it’s being addressed from all corners of Africa, from South Africa, East Kenya, from all the other countries. So I believe with time we’ll stop hearing cases of people with Albinism being kidnapped for their body parts.
David Hirsch: Yeah. Well, let’s hope that that’s a thing of the past. So what organizations are there locally in Kenya that support people with Albinism?
Duncan Keya: So there’s a Kenya Albinism Society, a big organization funded partly by the government. Because of Khalayi’s age, I’ve not really approached them in terms of support. I have a support group that is online in terms of Facebook and phone, WhatsApp. They’re called Positive Exposure Kenya. They do some amazing work.
So basically it’s a safe space for parents with kids with Albinism to share their stories, to talk about the challenges they have, and to guide people where to get sunscreen, because again, sunscreen is not a common thing. I don’t know if the right word is common thing, but we have the melanin, so we really don’t need sunscreen.
But sunscreen is quite expensive here in Kenya and in other African countries. So we’ve been fortunate enough in terms of our places of work, our colleagues, Aussie and Canadian colleagues, when they fly back home, they ask us, “What do you want me to bring?” “Just bring sunscreen, lots of it,” because it’s cheaper there.
David Hirsch: Yeah. Well I can only imagine. And can people send sunscreen to you or they have to bring it in with their own baggage?
Duncan Keya: No, they can send it to me. We’ve been getting lots of sunscreen as gifts.
David Hirsch: So I’m thinking about advice now, and even though your children are quite young, I’m wondering if there’s any advice that you can offer a dad, perhaps in a similar situation, or maybe even with younger children, about raising a child with differences.
Duncan Keya: I approach it from this point. They’re your biological children. They didn’t choose to be born with special needs, or what you’d call needs that you are not aware of. As a dad, you need to be their first point of protection. I am very protective of my children.
I remember a former boss of mine once introduced me as, “This is Duncan, who can ban the whole world for his children.” And that made me feel proud, because as a father, you are their first shield from the outside world, and you need to raise confident children, because they’ll have challenges in life.
And I normally tell any father that approaches me, “Your kid has a different ability. It’s not that they don’t have any ability. They just have a different ability. For my daughter, I can already tell she’ll be one confident girl, and I just need to reinforce that.
So for fathers outside, and this is especially in the African context, fathers have always shied away from acknowledging children with special needs, and it’s more of a cultural thing. Or I would want to say it’s partly also ignorance, because you brought these kids into the world, so you need to take care of them and you need to stand up for them.
So just be there for them. Be the best father you could be for them. You have to do twice as much as any other parent or any other father outside there. If you want the best schools for your child, your children, you have to work harder. You have to do things that you never thought a typical African father would do.
I give an example in terms of hiring nannies. Basically it’s a role our fathers used to delegate to our mothers. But for me, a father of special needs children, I sit through the interviews, and I can see things probably my wife would not see in the candidate we are trying to hire.
And it also helps that, as I said, we are immigration officers, so sometimes we read people, and if the story does not make sense, that’s a denied visa. That’s a denied employment opportunity. So for fathers, African fathers, Caucasian, Asian, you know, always just be there for your kids, be the first shield. You are their first shield.
And if you miss that opportunity, these kids will grow up in a world that is not fair. So they need to get the confidence from the household before they go outside. They need to walk around and know, “I have a father that I can call,” or if you pass on, your kids can always say, “My dad was there for us, and my dad did everything possible to make sure that we were comfortable and lived a good life.”
David Hirsch: Yeah. Well, I love your heart. Thank you for emphasizing the importance of being a protector and being there. The way I think about it is that you need to be present. Not just physically present, but emotionally, spiritually, and I guess financially present. That’s obvious. That’s our primary role as dads.
I’m sort of curious to know, why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?
Duncan Keya: So first of all, I was having a conversation with my wife recently and she told me I have a savior mentality. So it’s a good and a bad thing. I’ll dwell on the good side of it. The good side of it is I don’t like seeing people suffer. I try to be a problem solver for people, strangers, friends and all that.
I’ve agreed to be a mentor because I realized that the male—and I’ll talk about the African perspective—most African men don’t talk about their feelings, don’t talk about their challenges. They don’t accept that they need help. They don’t accept that they need someone to talk to.
And I can tell you, once I started talking about this issue to people, to the media, I’ve been approached by a couple of fathers who I don’t want to say I’m secretly mentoring, but I’m not putting it out there. I am not putting out their names, but yeah, I’m mentoring them. They consult me, they talk to me when they’re having challenges.
I tell them I’m not an expert. Look, I’m learning. I learn something different every day. I learn from them when I talk to them, you know? And, recently one of them called me and told me about a major milestone, and I was so emotional about it. Because this person approached me, not knowing how this relationship will be.
But I want to change the narrative about kids with special needs. I want people to understand that we just need you to understand us. We actually don’t need the sympathy. We just need you to understand us and accommodate us and just know that we have challenges, as much the same challenges you have, but some of our challenges are just different.
We are not looking for all the sympathy that is out there. We are just trying to be fathers, be mothers, and be parents to kids with special needs.
David Hirsch: Yeah. Well, you’ve said it beautifully, that you’re not looking for sympathy. You just want to be heard and understood, and I’m hoping that, with efforts like your own and others, that you will be able to change the narrative.
And if there’s a role that the Special Fathers Network can play, we’re happy to do that. We’re thrilled to have you. You are one of the younger mentors. You’re likely to benefit from being among other dads, maybe not just African dads, but other men who are going through a similar situation. Because, you know, this issue of special needs, autism as an example, knows no gender, geographic, or socioeconomic boundaries.
It’s everywhere. And I think we can learn from one another. So thanks for being part of the network. Is there anything else you’d like to say before we wrap up?
Duncan Keya: I just know it’s good to be in a group of fathers that are standing up and being counted from all over the world, fathers who are speaking about these issues. I think we can influence the world to be a better place, and we can make a difference and help someone in a small way or a big way. And just thank you for interviewing me. This was a lovely chat.
David Hirsch: Well, thank you, and you’re welcome. So let’s give a special shout out to Gideon Akwabi of the Rotary Club of Kenya for connecting us.
Duncan Keya: Thank you, yes, Gideon.
David Hirsch: If someone wants to learn more about the Kenya Autism Alliance, the Albinism Society of Kenya, or to contact you, what’s the best way to do that?
Duncan Keya: You can contact me via email. My email is duncan.keya@gmail.com. For Kenya Autism Alliance, it’s a basic search on Facebook. You basically try to join the group or send a message, and the moderator will accept and get back to you. She’s called Cindy. In the same way you just send a message for the Positive Exposure Kenya group on Facebook, and you’ll get them. And both groups are on Twitter.
I have forgotten to mention someone very important who’s been highlighting this story for Kenyans for a very long time. She’s a mother of kids with special needs, autistic. She’s called Sylvia and she has a page called “Andy Speaks.” If you search Andy Speaks, you’ll see how she’s doing an amazing job highlighting all these issues.
David Hirsch: Well, we’ll be sure to include something about Sylvia and “Andy Speaks,” as well as your email address, and then links to the other organizations that we’ve discussed in the show notes, so it’ll make it as easy as possible for somebody to follow up with you.
Duncan, thank you for taking the time and many insights. As a reminder, Duncan is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.
Duncan. Thanks again.
Duncan Keya: Thank you, David.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups, and search dad to dad. 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 athorizontherapeutics.com.