Shumin: Hello everyone, I'm Shumin, and you're listening to The Extra Mile SG podcast, where we share stories on the joys, challenges and everyday moments of living with Down syndrome in Singapore. I'm very excited for today's conversation with a couple and also parents to a lovely and beautiful nine-year-old girl, Lexxa. My family and I had the privilege of spending time with them recently, and we learned so much from just an evening together.
Welcome, Eny and Djohan. Thanks so much for being here. Some of our listeners may know a little bit about Lexxa through your Instagram account, but most of our listeners may not know you. So maybe as a start, could you introduce yourself and your family, and tell us a little bit about Lexxa?
Eny: Hi, my name is Eny, and this is my husband, Djohan. We have one daughter, Lexxa, who is nine years old. Lexxa is currently studying in Primary 3 at a mainstream school. She is a cheerful and loving child who brings a lot of joy to our family. We are very proud of Lexxa and very grateful to be able to support her, celebrate her achievements and grow together as a family.
Shumin: Thank you, Eny. These nine years must have been quite the journey, and I can just imagine how proud both of you are of her. If I may just bring you back to the time when you first found out that Lexxa has Down syndrome, can you remember what that was like? And what were some of your fears or assumptions about Down syndrome back then?
Eny: When we first found out that Lexxa has Down syndrome, we felt shocked, worried, and we had many questions about what her future would look like. We wondered if she would be able to learn, communicate, make friends and live a happy and independent life. At that time, some of our fears came from things we heard or assumptions we had about Down syndrome. We thought her challenges might limit what she could achieve.
But looking back now, we realised that many of those fears were based on not knowing enough. Today, we focus less on what she cannot do and more on supporting her strengths and celebrating every milestone, big or small. Down syndrome does not define who she is. She is Lexxa first — a loving, unique and amazing child with her own dreams and potential.
Shumin: One of the things that really struck me about you and Djohan is the way that both of you choose to believe in Lexxa's potential, even when others may have certain doubts. Why don't you tell us a little bit more about that — about that belief?
Eny: From the beginning, we knew that having Down syndrome might mean she would face some challenges. But we never wanted to let those challenges define her. Sometimes, people may focus on what children with Down syndrome cannot do. But we chose to focus on what Lexxa can do and how we can support her to grow.
For us, believing in Lexxa does not mean expecting everything to be easy. It means giving her the chance to try, allowing her to make mistakes and celebrating every step forward. Lexxa has taught us that when we give children opportunities and believe in them, they can surprise us in the most wonderful ways.
Shumin: Mm. Yeah, I really love that you mentioned a few times about our children surprising us when we give them opportunities and when we believe in them. I think on our end, Mia has definitely surprised us many times, and those moments remind us that, you know, sometimes without even realising it, we as the adults are the ones who set limits on their potential — and they can be so much more.
So maybe with this belief in Lexxa that you have, how does it actually influence the way that you parent and support her? I remember when we met, you all were sharing with us about showing her tough love and being firm and having expectations of her. Can you tell us a little bit about what that looks like in your everyday life with Lexxa?
Djohan: When we talk about tough love, we don't mean being hard on her. It means loving her enough to have expectations for her and believing that she is capable of more, and believing in what more she can do. We don't want to underestimate her or do everything for her just because some things may be more challenging.
This means encouraging Lexxa to try things on her own, to be responsible for small tasks and to keep trying even when something feels difficult. For example, we give her time to solve problems, complete her routines and express what she wants instead of immediately stepping in to help.
But of course, we also understand her needs and provide support when she needs it. It is about finding the balance between giving her help and giving her the space to grow. And our role as parents is not to remove every challenge, but to guide her through challenges and remind her that she is capable.
At the end of the day, our expectations come from love. We have expectations for Lexxa because we believe in her, and we want her to grow into the most independent and confident person she can be.
Shumin: Thank you, Djohan. Yeah, I think that's very true. I must admit that with Mia, I still struggle sometimes to hold back and not jump in to help her whenever I see her struggling and frustrated with a task.
Could you share more about that actually? Like, what is it like when Lexxa gets frustrated when learning a challenging task or new skill, and how do you both support her through those moments?
Eny: Lexxa gets frustrated too. There are times when she cries or wants to give up because the task feels too difficult. In those moments, we always remind her not to give up. We tell her, "As long as you don't give up, we will be here to guide you every step of the way."
We reassure her that it's okay if she can't do it yet, because learning takes time and practice. Sometimes we take a short break, then come back and try again. We break the task into smaller steps and celebrate every little success.
Over time, Lexxa has learned that even when something feels hard, she can achieve it if she keeps trying.
Djohan: If I may add, when we talk about sometimes taking a short break and then coming back and trying again, it may not just be a break for Lexxa. It's also for us as parents.
I think we have to do this together. It can't just be one person. If we love our kids, I think we should take this as our responsibility as parents.
Also, when Lexxa takes a short break, it doesn't really mean that Lexxa has to take a break. Maybe Eny has to take a break, then I have to step in. Then Lexxa will not feel that there's a break for her. Actually, she will feel that it's a continuity, but it's a different way of love that we actually give to her — a different way of teaching her how to try again.
We carry on with the same task, but in different steps.
Shumin: Hmm. Yeah, thanks, Djohan. And that's also teamwork for both of you, right? Joining hands in supporting and loving Lexxa, especially when she's trying to learn something new.
Could you share one or two moments when you may be feeling like, you know, maybe Lexxa just cannot do this, or maybe Lexxa's not ready for this? But instead, you all tried to use a different approach, and then that led her to achieving something that you all didn't expect she could achieve. Has there been such a moment? And could you share with us a little bit about that?
Eny: Sometimes she just needs a different way of learning, not that she is unable to learn.
One example that we really remember is her potty-training journey. When Lexxa was around 12 months old, we started introducing potty training. We believed in giving her the opportunity instead of assuming that she would not be able to do it because of her diagnosis. With consistency, patience and encouragement, Lexxa achieved potty training at 12 months old. This showed us from an early age that she was capable of more than people might expect.
Another example is her learning maths. In the beginning, Lexxa found it difficult to understand concepts like before and after, especially when learning addition and subtraction. Instead of thinking she could not understand, we tried to find a way that made more sense to her. I changed the explanation into something more visual and simple. I taught her that going up means addition, and going down means subtraction.
This helped her connect the idea with movement and made the concept easier for her to understand. Slowly, she started to get it, and eventually she was able to do addition and subtraction.
Shumin: I really love this story of Lexxa learning maths.
And yeah, it also reminded me of this quote that I read in a book that says, you know, if someone has tried to teach my child something and he or she doesn't get it, the problem is with the method, not my child's intelligence. And when you figure out how my child needs to be taught, my child will learn. And I think your example here really illustrates this very nicely.
And also, potty training by 12 months is so amazing. Yeah, we would love to hear more about that at some point, about your journey with Lexxa.
But now, I have this question that's on my mind. Were there days where actually believing in Lexxa felt difficult? You know, and what keeps both of you going?
Djohan: Hmm, okay. Yes, there were days when we felt tired and discouraged.
That day maybe my wife sometimes, and when it is on my wife, then I can't be making that day... it's on me too, because it can't be both of us tired and discouraged. So either one of us can feel tired and discouraged, but the other one, I think, should always support.
Sometimes progress is very slow, especially for my wife, Eny, who has been taking care of Lexxa almost 24/7. So we wondered sometimes if we were doing enough. Especially for my wife, she always thinks about whether she has done enough or whether Lexxa has tried hard enough. So we never give up because we believe in Lexxa. That's the first thing.
But we remind ourselves that every small step is still progress.
Sometimes the person who's teaching may forget, so then the other person, I think, as parents, we have to remind one another. Because we are human, we can get frustrated. When we are in it, we may not think clearly.
Shumin: Mm.
Djohan: That is why reminding one another that we can celebrate every little achievement, no matter how small, is the best way.
And we always teach each other: if Lexxa doesn't give up, we won't give up either.
I mean, Lexxa may look like she's giving up, but if we cheer her up and give a different approach, then don't just tell her, "Don't give up, don't give up, don't give up," because they are kids. They may not understand when you just say, "Don't give up."
What do you mean by "don't give up"? "Don't give up" means that, don't worry, we are here to help you, and what we want is for your good.
So that mindset helps us keep going. And seeing her overcome challenges gives us hope and reminds us that patience, love and consistency really do make a difference.
Shumin: For parents who have just received a Down syndrome diagnosis and are carrying all sorts of fears about the future, what might be something you would say to them?
Eny: Give yourself time to process your emotions. It is normal to feel shocked, worried and uncertain about the future. The diagnosis is only one part of your child's story. Your child is still the same baby you loved before you received the news, with their own personality, dreams, strengths and potential.
Try not to let the fear of the unknown stop you from seeing what your child can become. Take things one step at a time, celebrate every milestone and remember that progress may look different for every child.
Your child needs your love and belief more than anything else. The journey may not always be the one you imagined, but it can be a beautiful journey filled with growth, unexpected achievements and so much joy.
Your child is not defined by Down syndrome. They are unique individuals first, and they have so much to offer the world.
Djohan: Yeah, really, the kids have so much to offer to the world. Every one of us, when we are born, I'm sure that we have so much to offer to the world. It just may not be something that our parents will see in the beginning.
So the most important is love. Definitely, it's love.
So take things one step at a time. It's definitely one of the good ways, because it's never easy when we hear the diagnosis. But don't forget that nothing comes easy in our life, right? So we've got to be ready. If we want to start the race, then we shouldn't give up in between. We should go all the way.
But remember, the goal is not important — whether you are reaching the finish line first, or in the middle, or last. That's really not important. We always know that the process of going through the race is so much more important, because the race is not just one time. There may be many races. Today, you race for this. The next day, you race for something else.
This is our life. There will always be challenges. That's why I say, don't think that it's easy. And we also never say it's easy. We just say, take things one step at a time.
Whatever we say is based on what we experience, and you may just take it as our opinion, because every child is different. We don't compare one with the other.
And even for us, sometimes we have to remind one another of this.
We can say like this now, but later that night, it may be a different case. Me and my wife, we may be at war! She will say, "No, I think Lexxa can do it." I say, "No, you should give her some time because you should rest, because Lexxa is also having too much for the day." We may have this kind of difference.
Shumin: Mm. Yeah.
You said many good things there, Djohan. About comparison, about fighting against comparison because every child is unique and has their own journey. And also, you know, sometimes having different opinions between both of you as husband and wife. I think that's something we definitely experience also, with me and my husband, about how best to support Mia. Those are all very real things.
Indeed, this journey is really not easy, but the encouragement here I'm hearing is to keep going, to not give up, and to keep believing. Keep believing in Lexxa's potential and what she can do and what she can offer the world.
I am very, very encouraged by both of you and your family, and also very encouraged to see where Lexxa is.
Thank you for taking the time to do this with me and to remind everyone who is listening here, you know, to really, truly hold that belief for our loved ones with Down syndrome — to see beyond the diagnosis, to see the person first, to believe in them, and to give them opportunities to grow and to keep trying.
Yeah, so thank you for giving us a glimpse into this journey in your family and the lessons that you have learned along the way.
To the families who may be joining us with Down syndrome, I hope this is an encouragement to you to keep believing in your loved one.
And to others who are listening in, may this also challenge you to see a person with Down syndrome beyond the diagnosis and the common assumptions that are tied to it.
And like what Eny and Djohan shared with us today, to form expectations of them not based on assumptions, but based on love and based on understanding — just like you would with anybody else.
If you would like to follow along Lexxa's journey or to connect with her parents, you can find them on Instagram at @LexxaLearningJourney.
Djohan: If I may...One more tip.
I feel that we should not just see the good side of whatever is on social media. So whatever we see, it looks so good, but there is a lot of hard work behind it.
If you want to find out more, just reach out to us — parents of children with Down syndrome. We can speak to other parents to understand more about how others do things. We can get a better way, I feel, to provide ourselves with more information and understand what actions we should take better in the future.
Shumin: Mmm, yes, that's a good reminder.
We may see what we see on social media, but there's so much more behind the scenes that's going on. And there's so much more to learn as well.
Yeah, thanks for the reminder, Djohan.
Thank you so much for sharing, and to all who are listening in, thank you for listening. And we'll see you in our next episode.