Shumin: Hello everyone, I'm Shumin, and you're listening to The Extra Mile SG Podcast, where we share conversations and practical wisdom from people whose lives have been touched by Down syndrome in Singapore.
Today, I'm excited to be joined by Lamin, a physiotherapist. And this conversation is especially meaningful to me because Lamin was someone who played an important role in supporting Mia and our family during Mia's first year of life. We benefited so much from his knowledge and guidance.
Thank you so much for being here, Lamin. Could you maybe start by sharing a little bit about yourself and what you do as a physiotherapist?
Lamin: Hi, Shumin. I'm a physiotherapist, but I'm a paediatric physiotherapist working in early intervention in the community setting. Basically, I work with children from zero to 18 years old. I've been working with this age range for many years.
My role isn't just about getting a child to move. It's about helping kids build functional independence and confidence to explore their everyday world, especially children with Down syndrome.
Shumin: Yes. So, we got to know you because Mia started physiotherapy when she was very young. I think she was just three or four months old when we met you. Could you share a little bit about what got you interested in working with children with Down syndrome in particular?
Lamin: This is a very good question. Since I graduated, I started working with children in a special school. Then my interest grew towards working with children with different neurological backgrounds. But I think I especially love working with families—working alongside families from their child's infancy and then through their major developmental stages. It's very rewarding for me to see how their development happens, and then to see these early foundations turn into independent movement in children with Down syndrome. It is very exciting to see. And it's also very rewarding to know that your work as a physiotherapist matters to families with children with special needs.
Shumin: Yes. I can hear your passion for journeying with young children and with families.
Lamin, when I was a very new parent to Mia, when she was very young, one of the biggest challenges for me was trying to understand how Mia's body might work or move differently compared to her typical peers. And we hear terms like low muscle tone, or having very loose joints, or things like that. Those terms can sound quite abstract. Maybe for the benefit of a parent who is new to this journey, could you help us understand, in simpler language, how might a child with Down syndrome move differently?
Lamin: Alright. This is a very good question. And I think our understanding of low muscle tone and ligament laxity can be quite different.
For low muscle tone, we also call it hypotonia. So, "hypo" means low, and "tonia" refers to tone. Basically, it's low muscle tone. We can think of it like a guitar. When you're about to play a guitar, the strings have to have a certain amount of firmness, right? Then you're ready to play and produce a sound. With low muscle tone, think of it as a slightly looser string. It can still work, but what we need is for the muscle to put in more effort and drive to switch on and make the string work.
So, what it means for our little children with Down syndrome is that they have to work harder in order to achieve certain postures, like sitting against gravity or perhaps crawling. Even little things, like holding their head up in the midline, may require them to work harder than children with typical muscle tone.
That's why their milestones may be reached at different ages or different months. Nobody is identical in terms of when they're going to hold their head up and things like that. It takes a lot of effort for them to work on these things. So that's how we need to understand low muscle tone, how it impacts children with Down syndrome, and how we can support it.
Shumin: Mm, thanks for helping us break that down with a very helpful guitar illustration. So, when Mia started physiotherapy at around three to four months old, I remember wondering, you know, she's really, really young. She's a tiny little baby who is still so sleepy. Can she really benefit from physiotherapy at that age?
But I also hear that it's important to start young and start early. Could you help us understand that? Is it important to start physiotherapy early, and what difference can that make?
Lamin: Okay. So what we need to understand is that early intervention is very good to start as early as possible for children with Down syndrome. We know their diagnosis even before they are born, so we know how their life is going to be. We can start as soon as the medical situation is stabilised. It's good to start early because early intervention shapes how movement patterns develop—how they move—before they start to develop compensatory habits.
Because of their low muscle tone, they may start to move in a way that isn't as efficient. They will start to compensate in certain ways. So, before those compensatory movements or habits set in, it's good to start physiotherapy so that we can guide them to move in a more appropriate way.
Shumin: Mm. Okay.
Lamin: So, to explain that, apart from low muscle tone, they also have ligament laxity. I think here I want to explain a little bit about ligament laxity. Ligaments are like—think of them as rubber bands holding the joints together. In Down syndrome, these bands are extra stretchy, like they're slightly looser. Because the joints are looser, the surrounding muscles need to work harder to stabilise the body during sitting, crawling or standing.
So basically, children with low muscle tone and ligament laxity need to work harder—maybe twice as hard as their peers—to achieve their usual motor milestones. And when they are working very hard, they will start to use compensatory movements. So before these movements set in, it is good to see the physiotherapist so that we can guide and form the movement.
Because sometimes parents can be quite anxious about hitting motor milestones, right? They may start to work on certain things before the child has the foundation for them. For example, you may not want to push them to work on sitting before they really have proper head control. So, we need to work on the motor milestones, but at the same time, we cannot rush.
Having a physiotherapist alongside the family is very important, so that parents can feel calm in their everyday lives, knowing, "Okay, we are on the right track. We don't need to rush. This is the step that we should be working on this week or this month. This is what is going on."
So we're not rushing just to hit the motor milestone. We're also looking at the quality of movement, and the way the children move.
Shumin: I see. Okay. So it's also about having the physiotherapist journeying with the family from as early as possible, to provide reassurance and the right guidance on where the child is at.
And the physiotherapist can also help to assess where the child is at and what the child should be working on at that point in time. Because you're right, I think caregivers can be very anxious. Especially if we're looking at a typical milestone chart, we can get quite anxious about what we should be working on.
Lamin: Yeah, yeah. So I think that's true. When looking at the motor milestones, there are a lot of stages in between that parents may not notice. Certain things are supposed to happen before this or that, and they may not realise that. And learning movement is also about learning—learning how to move, right? Sometimes this learning curve can be quite—it's not linear. It's always bumpy. Certain things may come as a skill, but certain things may not come quickly. Then we're not sure what to do, and that's where therapists can help.
Shumin: Mm. Okay. Thanks for sharing that, Lamin.
Since we're talking about milestones and development, and also about being anxious, I think one of the common things for caregivers—and I'm speaking for myself here—is that we're very tempted to compare. Sometimes we see that another child is already crawling or walking, but our child isn't there yet. Is there actually a reason for this range in development? I mean, I know every child is different, but is there a further explanation for this range in development with Down syndrome?
Lamin: Alright. I think comparison is a faster way to rob our joy, or to take away the time and happiness that we're going to have with our children.
So I think what we need to understand is that a delayed milestone is not a denied milestone. It's not like there may be a delay in their milestone, but it doesn't mean that we're not going to reach there.
I think children come with different heart conditions, different thyroid levels, and different respiratory histories. All these things affect their stamina. And then also, their muscle tone and ligament laxity exist on a very wide spectrum. Some children may have lower muscle tone and looser ligament laxity than others, so they may not be on the same page.
That's why, even among children with Down syndrome, you'll see that they're hitting their motor milestones at different times and at different points. They all come from different backgrounds.
And we also need to understand that our children with Down syndrome have their own individual character and temperament.
Shumin: Hmm, that's right.
Lamin: Some children are very curious. They're curious, they observe, and then they take slow steps. And some children are more like—they'll dive towards what they want. They're more assertive. They want to move before anything else. So we also need to take that into account. That's why children with Down syndrome are hitting their milestones at different times and different points in time.
I think for me, that's also the beauty of children with Down syndrome being individually different. We don't all need to hit our motor milestones or our developmental milestones at exactly the same time. I think it would be quite boring to see everybody hitting them at the exact same time! Our developmental milestone charts are more like an average kind of chart that we look at for reference.
Shumin: Mm-hmm. Yeah. Okay.Yeah, I think that's helpful. And the personality and temperament point—I definitely agree. Mia is the more cautious kind, so she really needs a lot of time to observe and then take her time to be ready before she can try.
Lamin: That's true. I remember Mia. She's very curious. She observes everyone, and she makes sure that she understands things before she attempts to do things. That's her personality. That's how she's trying to bring herself into the world and move through this world. So, we have to respect that.
Shumin: That's right. And I think it took us some time to realise that we cannot force her, because everybody's unhappy. We just need to let her take her time to be ready.
And then, when she's ready, the beauty of watching her try a new skill and become confident in it is really a wonderful journey.
Lamin: Yeah, that's true. I think one of the ways that they learn is by doing things by themselves.
Sometimes we're very, very fast to prompt or assist, or to help them learn faster. But sometimes we have to take a step back and give them some space, and then see what they're going to do.
For example, reaching out and grabbing something by themselves will kind of create the wiring in their brain faster than the way that we are helping them with our hands to grab something. It's very different.
So I think sometimes, for a therapist, we have to wait a little bit and then see how they're going to move and what kind of experience they get. Sometimes you may see us just sitting and watching, but that's also part of the therapy. We're looking at how they're going to solve a problem, or how they're going to move their body. We'll wait for a bit, we'll pause for a bit.
It's also a skill. We cannot prompt them all the time. We have to give them a certain amount of space so that they can gain their independence.
Shumin: Mm. I think that's a really helpful point for caregivers to understand. Because sometimes, when we're anxious and we go into a therapy setting and we see the therapist just watching, we're like, "Is this useful? What is the therapist doing?"
Lamin: Yeah! "What are you doing?" I think for some people, for example, if they're not used to working with children, or they're not familiar with this kind of early intervention therapy setting, if they observe from a distance, it looks like we're doing nothing. It looks like we're just playing with the kids. But actually, it needs a lot of planning between different therapists and teachers and early intervention teachers.
It needs a lot of communication between us to see, "Hey, stop it," or "How are you positioning yourself?" Or, "What should we not prompt? What should we prompt?" And what are we doing? What are we emphasizing on this particular week?
And when I'm talking about development for children with Down syndrome, physiotherapists usually emphasize their motor milestones and motor development—how they move. But it's also important to understand them as a whole. How are they learning about communication? What are their sensory experiences? There's a lot of things happening.
Of course, they learn how to move first. Movement is very important at the beginning. They need to be able to hold their head up to look. They need to move their head to look at their surroundings. And in order to do that, they need to have good head control. But the thing is, when they look, what are they going to look at? How are we going to communicate with the child? There's a lot of other things happening.
So I think at different points in their lives, different therapies play different roles. Maybe when they're three years old, they may not need physiotherapy as much as they needed it when they were little, like at three months old. It may be occupational therapy at one point, or at three years old, maybe speech therapy. Different therapies play different roles at different stages.
Shumin: Mm-hmm. Yeah. So having a holistic understanding and view of their development is a very important thing to have throughout their journey.Lamin, this may be a hard question to answer since this is an audio conversation, but do you have any advice for parents who are new to the journey and...
Shumin: Maybe when parents are waiting to start early intervention, or are still looking for therapists, are there things that they can already be doing at home to support their infants?
Lamin: Okay. When they're waiting for a placement, I think parents need to be a little bit less afraid to hold the child, to talk to the child, to touch the child, and to carry the child. Sometimes it may be a little bit intimidating because every parent is going through different emotions at that point in time. The child is very young, and the first thing they don't want to do is hurt the child. So they always have this fear: "Am I hurting my child? I might hurt my little one." That kind of feeling can sometimes push them away from doing things with the child.
For children, especially children with Down syndrome, what they can do is what we call tummy time—lying on their tummy. For example, when they're lying down, they can lie the child on their chest, chest-to-chest with the parent. Sometimes they can put the child on their lap. They can also prop them on a little rolled-up towel. These are simple ways to introduce tummy time.
Tummy time is a very important foundational skill for them to acquire in their life. Later, we need to do a lot of crawling and creeping, and these skills are very important because they give them a lot of foundational skills—especially strengthening of their limbs. The lower limbs help them develop the locomotor skills they need to walk around, and the upper limbs help them hold a pencil and do a lot of daily activities with their upper limbs. These skills are very important.
So, to develop all those skills, you can start at home by simply putting the child on your chest. It's very simple, but that's something we can do at home.
Another important thing is what we call midline play. Bring their hands together to touch their face, or to touch your face, or let them grab appropriate toys. Their hands are going to be very small, so find toys that are appropriate for them to hold. They can also hold their feet. It's about touching their hands and feet, and giving them something to grab. Of course, with the toys, you have to find something simple and appropriate for them to play with. So, midline orientation is very important. That's why we can start as early as possible at home.
I think these are two skills that we need to remember.
And what we need to do is incorporate these skills, or play, or interaction with the child into our daily lives. It's not like, "Okay, I'm going to work on this for ten minutes per day," and then just leave it. No, it's not like that. We need to find a time when the child is awake. For example, maybe during diaper-changing time, or when the child is alert. They may have a lot of sleep time, right? So I think when the child is most alert, that's when they will learn the most. You can do it then.
And also, during diaper-changing time, you can roll the baby from side to side rather than lifting them straight up. Because it will teach them how to position themselves on their side. That's also an important skill, because when the child rolls, they also need to go through that sidelying position. So, diaper-changing time is very important.
And also carrying them. Young parents are going to carry their child, but usually the child will face their parents most of the time. You know, this is how they're going to carry them, right? But sometimes what you can do is face them outwards, away from you. Of course, we have to support them—support their trunk or support their hips—but have them face outwards. That will give them a little bit of a chance to hold their head up and also see their different surroundings together with you.
So, these are some general tips that we can apply for young parents.
Shumin: Okay. Thanks for sharing, Lamin. I think those are very helpful and doable things at home. And I think, also echoing what you said about not fearing to hold a child—I think that's very important advice as well.
Mia is my firstborn, so I couldn't really compare. But now that I have a second one, I can really feel the difference. Mia did feel very different. I remember she was very floppy as a baby, so it could feel quite scary to hold her, and even to do some exercises with her, because I was worried that I might hurt her. But I think these are helpful tips that parents can practise at home while waiting for intervention to start.
Lamin: Yeah.
Shumin: Yeah. You have worked with many children with Down syndrome over the years, I'm sure. Have there been any moments or anything that particularly inspired you or surprised you about working with this population?
Lamin: I think working with children with Down syndrome is always a joy for me. They are very happy, and they don't judge you. If they show care and love to you, they will show love to you no matter who you are. So I think that's a very lovely thing. That's something that I love about working with children with Down syndrome.
And I think they have taught me a lot of lessons. We always think that our progress in life is linear. We always think we're going to keep progressing and moving forward. But they always teach us that progress is not always linear.
They've also taught us a lot of lessons about resilience. They are quite resilient, and they also have incredible problem-solving skills. Especially if they want something, they will find a way to get what they want or to reach for what they want.
I think you might have noticed that with Mia as well. If they want something, they are pretty determined to get it. They are pretty determined—they will find a way.
Shumin: Yes. And that's where the compensatory behaviours come in, right? Because they will do whatever it takes to get to what they want.
Lamin: Yeah, that's true. They find a way. They will find a way to get there. So I think they've always taught me this lesson in my life: your progress cannot be linear. And it's also good to see that they reflect what you show them. You should show them your love, your care, and your communication with them, and they usually reflect that.
And it's very good to see how they develop. As a therapist, it's a very good thing to see. And another thing is that they always prove that their potential is not fixed by their diagnosis. Their potential is not always determined by their diagnosis. So they've taught me a lot of different lessons in life.
First of all, I just love working with children. That's the very first thing. And they don't judge you.
Sometimes children with Down syndrome, or children with low muscle tone, may notice their physiotherapists very well because the physiotherapists are the ones who are going to push them a little harder than everybody else. And our children with Down syndrome—they remember it. They notice it.
Shumin: Yeah. Yes, they do.
Lamin: They remember it. So when you come for the next session, they know. Because our physiotherapists are always looking at how we can make things slightly harder for them, so that they exert more effort. We're always trying to push them a little harder to work on their motor milestones.
Shumin: Yes, yes. So they know. They know.
Lamin: They know, they know. From my experience, they always remember me. And sometimes they will cry! But it takes a little bit of time to build the trust. Then after that, it will be alright.
Shumin: Yes. I can definitely remember some of those things with Mia before as well.
Lamin, as we come to the end of this conversation, is there anything else that you think would be helpful to share, or any words of encouragement that you have for caregivers who are just beginning this journey?
Lamin: I would like to say to the caregivers or young parents who have children with Down syndrome: you are their greatest advocate and you are their best playmate. Not just their therapist. You are their best playmate. You need to remember that.
And also, trust the process and lean on the community. Find the community. There are a lot of communities out there to support you and share their journey with you. They are willing to share. So lean on the community.
And remember that every small effort that you put in during their daily routines creates a compounding effect over time.
I think we all need to remember to enjoy them as a baby first, and not as a project to work on or a problem to solve. You need to remember them as a baby first, and then let their milestones and their progress unfold step by step.
So this is what I want to encourage young parents to remember. Thank you so much.
Shumin: Thank you, Lamin. Those are great words of wisdom. Thank you so much for generously offering your time and also your wisdom here, Lamin. I hope that this conversation will be of support and encouragement to caregivers who are listening.
And for those who may be listening from the wider community, I hope that they gain a better understanding of Down syndrome as well.
For everyone who is listening in, thank you for your time. We'll see you in our next episode. Thank you.
Lamin: Thank you.