All About Supporting Your Child Unconditionally – Episode 66 – with Takniyan Debbie Dachi
Takniyan Debbie Dachi, who currently resides in Nigeria, is one of the best examples of turning lemons into lemonade. Takniyan’s 13 year old son, Ezra, was diagnosed with a profound hearing loss at age 3. In fact, she never met someone with hearing loss till her son received his diagnosis. Takniyan has faced many challenges and has been inspired in supporting her son with his experiences that she created her own organization, The Rise Project, which supports young individuals with hearing loss in Nigeria.
3:00: Around 13 months Ezra was not reading or using key sounds. Takniyan reached out to a Speech and Language therapist who conducted a home visit. This therapist found it strange that Ezra did not react when the TV was turned off and this was an initial sign that something was wrong.
6:00: Once diagnosed, Ezra was placed in a deaf school. Although Takniyan initially placed him on the oral track, the school’s staff found that Ezra prefered communicating through Makaton, which is a gestural and visual form of sign language. As a hearing mother it was difficult not knowing what was best for Ezra and it is important to honor and validate a child’s experience as their own.
9:30: The cause of Ezra’s hearing loss has still not been discovered. Even though Ezra’s case has been tough on Takniyan’s family, they have developed a beautiful frame of mind and constantly encourage him.
11:30: There are some parallels with the story that Laura Prestasi shared in an upcoming episode.
12:30: Though she is of Nigerian heritage, Takniyan was born in London. In 2017, when she visited Ghana for a second time, she eventually decided to move to Nigeria. She was surprised that there was limited educational support in Nigeria that supported deaf and hard of hearing children and families and she felt that more needed to be done in her country of heritage.
16:00: Due to seeing the lack of support, Takniyan founded The Rise Project. The mission includes advocating for deaf Nigerians and ensuring that deaf children are supported by both the educational institutions as well as through the family unit. There is a large focus on having fun and social development. They even offer sign language courses for parents whose child/ren have a hearing diagnosis.
22:00: Takniyan also has two daughters. Both of her daughters realize the importance of communicating with Ezra through BSL (British Sign Language) in order to strengthen their sibling bonds. Parents should ensure that a deaf or hard of hearing child is part of the family community and is included in all aspects of their family life in order to be a validated member.
22:25: It is crucial to remember to be inclusive and to find ways to include the deaf community especially through your platform and specific roles that you hold. Universal design is becoming more popular and should be implemented whenever possible.
31:00: Bonus voice notes that took place after the interview
For more resources and research visit:
Mentioned In this episode:
Laura Prestasi, who will be a guest on an upcoming episode. Stay tuned!
Listen Next/Related Episodes
Ep: 67 All About Enlarged Vestibular Aqueducts (EVA) with Dr. Laura Pratesi
Listen to other mothers share their stories:
“Whether you have a disability or not, whether you are hearing or not, we are all people. We all want to have fun. Children, especially, all want and deserve to have fun. And unfortunately, in Africa, there is this mentality, I would say generally, children are not exposed to fun…” – Takniyan Dachi
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and you all know that something very, very important to me on this podcast is to build connections and have an international conversation because that’s what we can do these days. It’s unbelievable the power of the internet, and podcasting and Instagram. So, I love talking to all of you from all over the world. And I am very excited to introduce you to today’s guest. Takniyan Dachi is the founder of The Rise Project and she is going to share her experience both as being a mom to a deaf son, and all the information, educational services and all the things that she’s doing for deaf children in Nigeria.
Dr. Lilach Saperstein: “So, welcome Takniyan. Thank you for coming on this show.”
Takniyan: “Thank you for having me. It’s a pleasure.”
LS: “How’s your day going? How’s your week going? How has your year been?”
TD: “So far, we thank God have no complaints. Today was an amazing day. I managed to get a lot of ticks off of my list.”
LS: “That’s a great feeling. Congratulations for that. Nice!”
TD: “Great day. Thank you. What about you?”
LS: “Well, it’s quite late for me here in Israel. I think you are one hour behind me in Nigeria. But it’s the evening, long day, pretty tired, post bedtime. All is well. This is actually when I come alive in my podcasting time after putting aside my mom hat and turning on my podcast, educational audiology hat. Haha.”
TD: “Yeah, awesome.”
LS: “I would love to hear, first of all, about your son. How old is he and what has your journey been like with him? And then we’ll get to Rise.”
TD: “Amazing. So, I have a 13 year old who has a profound hearing loss. He was actually born hearing. He was diagnosed at three years and eleven months. So, some time between birth and that time, he lost his hearing. I tried to navigate as a mother with a deaf son the best way that I could have done. Before having a deaf son, I had never been in contact with another deaf person. I don’t remember meeting anyone who was deaf before, so he literally changed my life.”
LS: “Amazing. And I have to say, that piece right there, I know we talked about this in our chats, but the idea of hearing parents coming into a whole new world, whether it be their encounter with audiology or the deaf community and all of that happens all at once, like being in a new adventure and it’s not something that most people are eased into or have knowledge about. It’s just like boom and now you’re here. And you have all these decisions ahead of you. Was that kind of what it was like for you?”
TD: “Kind of, although because it took so long with our experience. I knew that something wasn’t right. Around 13 months, he wasn’t using his sounds the way that I thought he should be. So, I actually reached out to a speech and language therapist. We were in London and we were fortunate enough to have the NHS. So, a speech and language therapist came and did a home visit. Everything was going well but I think it was towards the end of the assessment, someone turned up the TV and she thought it was strange that he didn’t react to either the sound turning off or turning on. So, she said she would refer us onto audiology.
So, we were referred onto audiology and for a long time during assessments, he had something called glue ear, which I’m told you are familiar with. Initially, they were not diagnosing him as deaf because he was passing the ERAs and they had no qualm about what was going on.”
LS: “So, just for our listeners, glue ear is what people in the UK call it, which I think is kind of an adorable way to put it. In the US, people call it ear infections, otitis media, basically fluid in the ears. Glue ear is a good way to describe all that guck and muck that goes from the nose up. That’s very common too, that people will say, it’s just ear infections. But we don’t know that. We don’t know what’s behind ear infections, or glue ear. That’s a very common experience.”
TD: “Yeah. That’s exactly what we were being told. It was very common. And because he was passing all of his ERAs, there was no cause for concern. He was doing very well in school. He was quite hyper but apart from that, he was doing very well, especially with math. So, we kind of went on with this battle for I guess, three years. So, when we finally got this diagnosis, I was happy because I wanted to move on. I wanted to know what kind of educational setting I would put him into. I’ve heard about parents with newly diagnosed children in different kind of stages. You almost kind of mourn the loss of the hearing. I guess I went through that a little bit. But I was just happy to move on. I wanted to know what to do next, how he would be educated and I guess I was supported really well by the local education authority.
So, very quickly he was put into a deaf school. I was given the options of oral or sign. This was very interesting because as I said, I’m hearing and I’ve never met a deaf person before. So, I went with the option of an oral school and then all of the health practitioners and the people we were working with with the educational department, they were like, from what we can see, he is communicating using sign. He was already without ever being taught British Sign Language at that time. We were already using signs anyway. We had created our kind of way to communicate at home. So, apart from that, there is something called Makaton. So, I’m not sure if you use it in the states, in America, but in the UK, there’s something called Makaton. It’s used as a way to, um, enhance speech, I guess. And it’s not specifically for deaf people. Anyone can use it.”
LS: “Makaton. Is it more of a gestural system?”
TD: “Exactly. And it’s used for any child or adults, I guess, who have any type of learning disabilities. In the educational placement, they use that anyway for hearing children, deaf children.”
LS: “So, it sounds to me like he was adapting quite naturally to using the more gestural and visual language.”
TD: “Yeah. I think that’s the perfect way to sum it up. It was just totally natural for him. He enjoyed the transition. So, um, I think you summed it up best when you said that it was natural. So, it was a natural transition for him. But once again, being a hearing mother, I thought that other things will be better for him. Because he had a really late diagnosis, we were quickly advised to have cochlear implants, and that was done very quickly.
But then in six months, he was implanted bilaterally. So, on both sides, he was implanted with cochlear implants and they weren’t very good for him in the sense that he was developing speech. So, he’s very oral. He loves using his voice and his sounds so it was very positive in that way. Often now people say funny comments like, ‘Oh, are you sure he’s deaf?’, because you can have a conversation with him and understand maybe 30% of what he’s saying, so we get that a lot.
But in terms of the cochlear implants, they were not very consistent. So, I can’t remember which side, either on the left or the right, stopped working after maybe six months and then he was re-implanted and then the other side stopped working. So, it was just a very stressful period. I can’t even imagine how he felt. That whole time was very difficult for us. And it was that whole, what is best for the child? So, what does he want? What do we, as parents, feel is best for him? So, it was, it was very difficult. At the end, he hasn’t been using his cochlear implants for at least the past three years, I would say. And he’s had breaks. Even before the last break, it would break in between where he was not using his cochlear implants.”
LS: “And at any point, did you get diagnostics on why? The kind of reason of what happened to the hearing?”
TD: “There’s a company called Med-El. They sent it back and they kind of did all the diagnostic work but they couldn’t work out what was going on or the cause of it. So, it was left unanswered, pretty much like the cause of his hearing loss. We still don’t know why he’s deaf or why he lost his hearing. Why he was born hearing, but it was very important for us as a family, just to, not to dwell on it, because especially now, there’s so many beautiful examples of young, amazing deaf people. So, I think we were fortunate to always have that kind of frame of mind or way of thinking. And we’ve just always been very encouraging and supportive of his deafness.”
LS: “I am so grateful for you sharing that perspective because so many families really do focus on that and kind of stay there for a long time. And it is valuable. It’s definitely very important. And for some families getting the genetic testing, that’s important for their family planning or if they’re going to have future children, what decisions they want to make around that. And also how valuable it can be to know what the cause is. And then if you know the cause, you might also find out that there are other body systems involved like syndromes or does it affect the vision? Does it affect different things? So, there’s a hundred percent value in getting those answers, but also many times you won’t get those answers.
I actually recently had Dr. Laura Pretasi on the podcast as well. And she shared about how getting the diagnosis for her was the most crucial thing, because there were things that she could do to prevent it getting worse. The kind of hearing loss that she had was EVA and yeah, you can listen to that podcast episode.
So, what I value so much is that there isn’t an answer that’s one answer for everybody. It’s a very individual, case by case, family by family. And that’s what I want people to take away.”
TD: “We’ve had a very interesting time with my son in terms of the different educational settings he’s been in, because we started off with a school that was for total communication, which means that they encouraged oralism, they encouraged using sign and sign support. They used BSL, which is British Sign Language. And sign supported English. So, we started off with a deaf school for Ezra in that kind of setting.”
LS: “So, all of this was happening while you were living in the UK. And so, take me through what happened next when you came to Nigeria. I wanted to say back to Nigeria, but I actually don’t know where you are originally from.”
TD: “I’m born and bred in London, East London. I had never been to Nigeria. I’m of Nigerian heritage. I had never been to Nigeria. I had traveled to West Africa, Ghana, and I fell in love with Ghana. And because I fell in love with Ghana, I was like, you can’t go to Ghana and not go to Nigeria. So, I came to Nigeria in 2016 for a brief holiday. It was a brief holiday, but I fell in love with Nigeria also.
We then came back again in 2017. And it was on that visit that I decided that I wanted to kind of inquire more about what was in place for a Nigerian. Where we were staying at that time was just outside the federal capital territory, which is Abuja, it’s the capital. We stayed about 45 minutes from the capital. And at that time there was no deaf school at all. Even in the capital, there’s only one deaf school and I just thought that was alarming, especially considering that the population of Nigeria is estimated at 200 million people and set to show that 3.7% from the population are legally deaf. So, that’s, you know, just under 50 million people who are deaf in Nigeria.”
TD: “Yeah. I just felt like there wasn’t enough and I never take it for granted that I was fortunate enough to have been born in the UK. Because of that, my children were born in the UK. And the educational system, especially for children who have some form of disability, it’s so different to what happens in Africa and several different parts of the world. So, I was just like, something needs to be done. And that’s kind of how I founded The Rise project.”
LS: “That is a story. You were able to see how it was going maybe right or well in (other) places in the world and said, Hey, I got to bring this back here as well. And that it’s your heritage. It’s something that you’re coming to, people that you feel very connected to. I’m very intrigued by that. And it’s uncomfortable to say this, to say the least, when people come in with a savior mentality of like, we’re going to go to, you know, underprivileged places in the world and do this kind of work. It’s very different when it’s yours and when it’s because of your need for your family.”
TD: “I always like to mention this because often I get people saying, ‘Oh, wow, you’re amazing and we love what you’re doing with your foundation.’ And I’m like, I wasn’t really trying to do anything. I just have that empathy. And this is something I live with day in, day out. I can’t escape having a deaf son and everything that we go through. Because not everything has been easy. Apart from him being deaf, he has additional needs. He has a sensory processing disorder. So, there were challenges, especially in school. And I think it was those challenges that made me want to look further into what was happening back home, so to speak.”
LS: “When you founded Rise, The Rise project, what did that entail? What is it that you were able to put together?”
TD: “So, we are advocates for deaf Nigerians. At the moment, we work very closely with a deaf school. What I want people to know is that, whether you have a disability or not, whether you are hearing or not, we are all people. We all want to have fun. Children, especially, want and deserve to have fun. And unfortunately in Africa, there’s this mentality, I would say generally, that children are not exposed to fun, as we are in the West, but especially when you have a disability, for some reason, people don’t think that deaf children and laugh and play. So, we encourage a whole load of fun, a whole load of getting the children to go out. Trips, just social development.”
LS: “Ahh, this is it. This is why, you know, when we first connected through Instagram, I really felt connected to what you were doing because it’s not only serious all the time, even though it is very serious, of course, and it is about your child and it is about their development and their education. It has to also be about them being a kid, about them being your kid and a child in your community and how they can, you know, interact and play and have fun. And I really love this part of, you know, your mission. I connect with that very strongly.”
TD: “Yeah. It brings me such joy to work with all the children that we’ve worked with, to take them on trips, to put things in place. We did do some storytelling a couple of weeks back, and some of the expressions on their faces, some of them have never been given this opportunity. Another thing that I like to use my platform for, is to speak to other parents, other hearing parents who have deaf children in Nigeria, because I want them to know that there shouldn’t be a stigma attached to it. There’s no taboo. And for me personally, one of the greatest things I did was go out, I actually paid to learn British Sign Language. And that was one of the best things I could’ve done because now I can communicate with my child and my child can communicate with me. So, it’s very important for me to encourage other parents to learn sign.
So, that’s another thing we started doing. We were doing free family sign language sessions. (We would teach) simple things, basic things. What your child likes to eat. How are your feelings, emotions, just so that communication is there and then we reduce any possible frustration.”
LS: “Communication! Yes. Yes. That is the way that we can connect and for a child also to feel that their needs are met. It’s a level of safety to be able to connect to the people that you love. I think it’s so overwhelming for many parents, especially because like you mentioned at the beginning, hearing parents say, Oh, I would love to do the oral version, you know, devices and all of that. And that works for some children and some families. And it’s awesome, but it doesn’t work for everyone. And then there’s this kind of feeling that sign language is the backup. I think there’s so much room for everything, like you could do both. You could introduce some sign. Try to remember what the goal is of doing those things. So, that’s incredible that you were able to provide that. Is it BSL that’s being used in the deaf school in Nigeria?”
TD: “No. So, it’s Nigerian Sign Language. So many people have no idea that there are 344 different types of sign languages globally. Just like we have Spanish or French or English. It’s the same as sign language. It’s all about awareness. And I feel like, through our platform, we’re able to do that. We’re able to let Nigerian parents know. Nigeria has so many different tribes and dialects. I always use that as a way for them to connect. For instance, in Nigeria, you’ll find people who speak the language called Igbo. You’ll find people who speak Hausa. You’ll find people who speak Yoruba, and then there’s Pidgin English. And then there’s slang. Pidgin is like slang or broken English. I mean, it’s the same really in the deaf world, depending on where you’re born, where you’re raised. So, yeah, it’s Nigerian Sign Language. Yeah.”
LS: “So, that’s why I was asking about if the classes that you’ve been offering are in Nigerian Sign Language.”
TD: “Okay. Yes. It’s Nigerian Sign Language. Yeah.”
LS: “Wow. That’s incredible that you’ve been able to connect and encourage and inspire a lot of families around these topics.”
TD: “It’s a blessing really. It’s a huge honor to actually implement a little bit of change in Nigeria, especially as we’re still adjusting. But, yeah, it’s a huge honor, to be honest.”
LS: “Yeah. I’m very curious about your daughter and how it has affected her life.”
TD: “Okay. So, I have two daughters. So, my son is my first born. So, the seven year old, she’s just grown up, I guess, Just watching us sign. So, now she just goes off and she communicates using British Sign Language. I don’t know any Nigerian Sign Language but I am learning bit by bit every day and I have a British Sign Language, BSL level two certificate. So, all of our communication is done using British Sign Language in our house. So, my middle daughter, she is quite competent with her BSL, just based off of what she’s seen me and my son do. And I guess what he teaches her. She just picked it up and they go off and they have their own private conversations.
If we’re out, if they want to, they can have a little joke about some thing and no one has to know and they love it. And I’m really happy that my son has that so he doesn’t feel excluded in his own home. So, it’s really important. Even my last born, who’s five, her sign is developing every day. She’s able to communicate with him as well. And even where she doesn’t know what the exact signs she uses gestures, which is how we started off in the beginning anyway.”
LS: “Yeah. So, the reason I asked that is because one of the questions that come up for me a lot with the parents I work with is about how to make their child part of the family, because they hear about the isolation and the experience of many deaf adults who say, I just was like left in a room on my own. And was like tapped on my shoulder to come for meals. And that was about as the connection with family, it doesn’t have to be that way.”
TD: “It doesn’t have to be that way at all. I’m very conscious about that, actually, because when I was learning to use British Sign Language, the first level was a male teacher who was deaf and the second level was a female teacher and she was also deaf. So, besides from them teaching us the sign language, they were able to give us instances or experiences.
And I remember one of the teachers giving a very similar example to what you did about, you know, she was always told she was making too much noise. And initially, I think I was guilty of doing that with my son as well. I’m really happy that I had that opportunity with her, for her as an adult to tell me how she remembers her childhood, because I felt for her as an adult and I didn’t ever want my son to feel that way.”
LS: “Yes. Oh, and I’m so glad that you had those deaf mentors and knew deaf adults to share their experience and that you were able to learn sign language from a native signer, a deaf person, which is very valuable.”
TD: “Very valuable, exactly as you said, because you get their perspective and it’s authentic.”
LS: “Yeah. Is there any piece of advice you’d like to impart to everyone that they can kind of hold on to?”
TD: “We all have our specific platforms now, and for me, it’s really important for everyone to be inclusive and to knock down any barriers. Treat others the way we would like to be treated. So, um, in terms of using our platforms, think about others, think about the deaf community. Think about, you know, someone who maybe perhaps cannot see. Try to be inclusive with everything you do. So, if you’re an influencer, if you’re a doctor, whatever the case may be, use your platform to be as inclusive as possible.”
LS: “I’m so glad you’re bringing that up because there is something new to learn every day about how to do better. This idea of universal design that it doesn’t have to be, oh, this is specifically for people with disabilities and over there is everything “normal”, but instead to say, how can we make this accessible to as many people as possible in, you know, adding captions, providing transcripts as we do for every podcast episode…”
TD: “You transcripts are amazing.”
LS: “Thank you. I’m also learning about alt texts for images and that is new for me. So, we’re all growing and learning about the things we can do better together.”
TD: “Hopefully, to be honest, I’m guilty of it too, but it’s just like my daily mantra. So, everything that I kind of say for myself, I say to others. And it is difficult when you’re so used to a specific way of living or society or community. It is difficult to come out of that bubble, but if you can really bear it at the back of your mind, then that’s the way that we empower. That’s the way that we knocked down areas. And that’s the way that we can include everybody. Amazing. Thank you so much for that. I’m going to continue to do my learning and you know, anytime that I do something.
LS: “Amazing. Thank you so much for that. I’m going to continue to do my learning and you know, anytime that I do something that someone calls me out, I’ll say, thank you so much for teaching me because I try.
Okay. So, lastly, if people would like to connect with you or learn more about The Rise Project, where can they find you?”
TD: “You can find us on Instagram. So, it is @theriseprojectng or if you want to email me, you can email on email@example.com. We’re currently working on a web page so that we can have everything out for everyone to see. And so you can communicate and you can donate to our foundation because we are a nonprofit. Listen, we’re actually working on trying to open a new multifaceted deaf center in Abuja. So, yeah, those are the ways that you can keep up with us and find out about all of our amazing fundraising.”
LS: “Yes. I’m so glad we were able to connect and get this podcast out for the world to hear.”
TD: “Me too, thank you.”
LS: “I’m so glad we were able to connect and get this podcast out for the world to hear.”
TD: “Me too, yes, me too. Thank you. Just a little bit of connection issues, hahaha.
All of those links and resources will be linked in the show notes @allaboutaudiology.com as well as a full transcript of today’s episode. I also want to invite you, Takniya, and everybody listening to a retreat that I will be hosting and running in April, I’m very excited about it. It is going to be a retreat for parents who have a deaf or hard of hearing child. It’s mostly for hearing parents, that is, you know, who we’re trying to talk to because I believe that this is an underserved and underinformed group of parents in the world that are just getting a lot of conflicting information and a lot of big decisions. So, whether the diagnosis was recent or many years ago, I am going to be doing a seven day retreat. We meet every day for one hour on Zoom. So, it’s kind of like, not very intense. So, it’s not like sitting in front of your computer for six hours. I’m not doing that, but spreading it out over a week.
We’re really going to have an experience together. And it’s specifically to learn the things that come around this, like learning how to speak up and advocate and talking about how to find connection with your child, no matter what the communication barriers are, to connect with them, to build relationships with them. And like we talked about the sibling relationship and extended families and bringing them into your community too. So, I’m very excited to invite you all to this free retreat and you can all sign up for that at allaboutaudiology.com/retreat. It’s totally free. It’s open to parents and professionals can come too but I’m really talking to parents here and I’m really, really excited.
There’s going to be a lot of transformation, a lot of learning and connection because we’ll get to meet other moms from all over the world. And dads are welcome too as well. Haha. Very good. So, I will see you there and I’m really glad we were able to connect.”
TD: “Yes, likewise.”
Thank you so much for listening to the All About Audiology podcast. Come and find me on Instagram @allaboutaudiologypodcast, because that is where I hang out and make connections with you all over the world. My DMs are always open and I am so grateful for your listenership.
So, we did have a couple of technical difficulties throughout our call, and we continued our conversation a little bit just by sending voice notes to each other at Instagram. So, here are some more of the things that Takniyan wanted to add to our interview. And again, I’m so, so, so grateful that she shared so many different elements of her story and her experience. So, here are those messages.
TD: “He found it difficult to express himself. So, he was, I guess, lashing out. He was expelled from one school, permanently suspended from two. It was difficult for him. It was very difficult for me when he was expelled from the third and final school, it was just very traumatic for me. And my point is that if he maybe was not a black boy, further considerations may have happened. And because it was so stressful in the UK, it just made coming to Africa much easier for me…
We’re in Nigeria and then it’s completely different. So, if you have any kind of child with a disability, anyway, you’re pretty much ridiculed. If we’re out and we’re signing, this happens in London anyway, but it just happens times a hundred here, people come and pray for you. We are Christians and for a long time, I didn’t go to church because when he had his cochlear implants, this was even in the UK. In church, people would always, you know, kind of force us to come to the front and try to pray it away, oils and everything. And I really believe in God and I feel like God is in control. My God is in control. And who says that being death is the end of the world, because I know amazing deaf people, deaf teachers, deaf actors, deaf dancers. If my son could only grow up and be like some of the deaf people that I follow on my platform and Instagram, that would make me so happy.
Culture, race, definitely played a huge deal in why we moved back. And now I just feel like I have to do something.”
LS: “Thank you so much for all of this. And I think this is such an important topic. I wish we would have delved into this more and maybe we will on a future episode, about the praying and the miracle stuff and how that’s many times in conflict with reality what’s actually happening and what the family actually needs from their support network and spiritual community. And that is so common. So, I just wanted to comment on that first because that just at the end, really, really resonated with me. And also, I’m sorry you had to go through that in a way. It’s also like a place to educate and then sometimes you’re forced into this education role when you are the one who needs support. And that’s like also a thing that parents need to navigate.”