I am excited to say that I have made my first attempt at recording an interview using the podcast medium.
Jessica Tuohy, Lily’s physiotherapist, very sportingly agreed to be my first guinea pig.
In this episode, as a follow-on from my last blog post, we talk about early intervention, about what parents can expect from their relationship with their child’s physio, tips on how to do physio exercises at home, and the importance of sensory integration.
Jess is the Clinical Director of SPOT, an interdisciplinary therapy centre for children in Hong Kong.
Follow the SuperLily Podcast on Anchor.fm (https://anchor.fm/super-lily) and on Spotify.
TRANSCRIPT
Robyn:
Hello and welcome to the first episode of the SuperLily Podcast. This is the first of what I hope will become a series of conversations with people who play an important role in helping to support Lily’s development. The aim is to make the interviews informative and interesting, but also to try to answer the types of questions that I, and others as parents, find ourselves asking.
Today’s general theme is Early Intervention, a topic I covered in a recent blog post, and one about which I know today’s guest is also very passionate.
I am so happy to introduce my first ever podcast guest, Jessica Tuohy, who is a highly regarded paediatric physiotherapist in Hong Kong and also most of the time our daughter, Lily’s, favourite person. Jess is the Clinical Director of SPOT, an interdisciplinary therapy centre for children in Hong Kong. She has held this position for the last 3 years, but has been a physio with SPOT for 7, and is regularly described as the best paediatric physio in town. Parents value not only her expertise, but also her fun, enthusiastic and child-centred approach. She trained in Adelaide, Australia at the Women’s and Children’s Hospital, where she specialised in Paediatrics and worked for 5 years before coming to Hong Kong. Jess’s specialty is neurology and she is an advocate of early intervention.
Jess, welcome to the SuperLily Podcast and thank you for agreeing to be my first guinea pig!
Jessica:
Thank you very much for having me.
Robyn:
Could I start by asking you to tell us a little about yourself and why you decided to become a paediatric physiotherapist?
Jessica:
Sure, I want to say that I’m honoured to be your first guinea pig, I think your blog is great, I have been looking through and it looks really good. So a little bit about me. I have been in Hong Kong for seven years, so I just got my permanent residency. I came here with my husband seven years ago and I have a son who is 2 years old. I am from a small country town in Australia, I am the oldest of three siblings, I have a really big extended family, so my dad is one of twelve children, I have around 30 first cousins! I think I always knew I wanted to be a physio. I think initially I thought I wanted to get into sports, which I think most physios do; however, after my paediatric placements, and also just growing up with children it just seemed to be a logical progression for me, and I certainly couldn’t imagine working with anything other than children now that I am working with kids.
Robyn:
Well it’s clear that you’re a natural. I must say I also funnily enough grew up in a small rural town with lots of siblings, but we never had any cousins, we had three cousins, so I’m very envious of all of yours!
So Jess, could you explain – obviously you work with children with a range ofdiffernet developmental delay and disabilities, and Lily’s specific challenge in life is cerebral palsy – what early intervention for cerebral palsy is all about, and what its goals are from a physio perspective?
Jessica:
You’re right, I work with a range of children with a range of diagnoses and difficulties, but I guess Early Intervention itself is pretty self-explanatory in that it is getting intervention for your child, based on their needs, as early as possible.
I looked through your blog and you have some great articles there that you mentioned on neuroplasticity, and taking advantage of early years, to make the most of the ability of children to learn and adapt. There was mention of pre-synaptic pruning and those sorts of things, which are very in-depth areas to look into, but I guess that underpins the reason for starting early with children.
In normal development there is an astonishing amount of growth and change that happens in the early years, and this is no different for children with disabilities. I always say to parents early on, that babies brains are developing a map of their bodies, and the way they learn about their body is by seeing it, by touching it, by using it, or by having someone touch or facilitate. So the more we can expose children to their bodies, and ways they can use their bodies in a functional way, the better their outcomes. From a physio perspective, our goals vary from child to child, but essentially we are working toward as close to your child’s normal development as possible. This may not be walking necessarily, but could be crawling, or sitting, or rolling, or just positioning to make daily cares easier.
Robyn:
It’s so interesting Jess. Obviously Lily was my first child so seeing any child grow up is educational, but it was fascinating for me to understand this idea that because her motor ability and her limbs had been affected, she wasn’t experiencing the kind of movements and exposure to her body and her surroundings that other babies ordinarily would, and it was just such an opening up for me about how incredible the human brain and body is and how it grows and develops. And the things we can do to help little babies like Lily get this type of exposure as we have done in the past year.
In your opinion does it make a difference at what age a child with developmental delay or CP starts to have early intervention?
Jessica:
I think so, I think generally, talking about children with cerebral palsy, intervention does start early because in the NICU if they are born prematurely they do tend to have input, whether that is monitoring of their muscle tone or whether that’s talking to parents and nurses about positioning. So you might have noticed they did some nesting and things like that to try and encourage her to be in a more flexed position when she was little. All of that early stuff is important. But I think really early on the priorities for babies and children is food, nutrition and sleep. So that’s one thing. I had previously worked in a NICU and we tried not to intervene too much in the early days but wanted to optimise their position, or optimise their resting as much as possible.
So early intervention is key, but also parents put a lot of pressure on themselves to be all things from the start and to give their children as much support as they can, but really they’re having a hard time because they’ve been born early out of an environment that’s warm and supportive and they need to mimic that comfort as opposed to how can we move them, how can we support them. So early intervention from birth is good but we [physios] would have minimal input then.
Then I think after all of that has settled and maybe even once you get home, that is when we can have a bigger impact. We can look at their positioning, we can look at how you’re playing with them, we can encourage you to bring their hands to the midline we can encourage you to ensure theyare looking to both sides of their body. Every child with cerebral palsy is different and has different challenges, different levels of function, so it might look different for everyone, but we move from this idea of having this really fragile baby that we need to support and take care of and protect, to actually starting to challenge them and starting to think about how we can build their skills and continue to support their growth rather than just holding them and making sure they’re safe. Once they’re at home we can make a big difference, and once they’re more stable. And that can look different for every child.
Robyn:
That makes a lot of sense, certainly (obviously it was now a while ago and you come out of the NICU knowing so much more than you did going into it), but it might be worth pointing out that if you are in a NICU with a preemie baby, ask is there any physio input happening, or to know what it looks like. It may be happening without you being aware because they don’t want to trouble you with it as you say at that early stage parents are going through so much, but they may not be doing anything about it, either because they are focusing on your child’s health which is the priority, but I certainly know that at some point we realised Lily was always lying on one side and we requested that they move her a bit. There is so much you don’t know and you obviously learn as you go, but it is always good to ask questions about these things.
Jessica:
I have had also had families come into the clinic who have had their babies in the hospital and we have had a meeting to discuss what is happening in the hospital. And it depends on the hospital you’re in, some are more supportive than others. It can be around their training as well so if you’re not sure or if you have a little feeling that something is not quite right, then ask them but if you feel like you’re not getting the answer you want, then ask someone else.
Robyn:
I think that is absolutely right, never be afraid to ask, you might get shot down but that’s the worst thing that could happen.
So, Jess, you have discussed some of it, but when you first meet a child what approach do you take and how do you engage with the parents to discuss what their child’s needs are from a physio perspective?
Jessica:
This really depends on the child, the family, the age and ability of the child. So I now work in private practice and I rarely see children in that acute setting anymore. It’s usually once they’re medically stable. I guess my approach is to look at the child and their current abilities with an open mind. I like to be strength focused, but also look out for any abnormalities in movement patterns or muscle tone. I then like to discuss this with parents, and explain that I am looking for abnormalities, and what I would expect at their developmental either actual or adjusted age, versus what we’re seeing.
But I will never assume inability. Some children’s birth histories are significant you know they have had a really rough time early on whether it’s a lack of oxygen at birth or brain bleeds or what have you. If you read just their report you could assume that they are not going to have a lot of function, but the thing is to read and have that information but also look at the child and aim for the best. So I think early days particularly for families of babies born prematurely I also do a lot of listening in our sessions.
Parents get so many opinions about so many aspects of their babies lives and predictions of their outcomes, I like to give some perspective and help parents to see the positives, by highlighting not just weaknesses but strengths and small changes. Because I think it is difficult with all children to see progress, but when you are living that and 24/7 worrying about this child and you know, what other children are doing, it’s hard to see the small wins but if you then look back and think three months ago what was she doing, what was he doing you see really great progress. They’re not typically developing but have made some great gains. So part of my early role is really encouraging that optimism as well.
Robyn:
Well I just loved that about you and we found that so encouraging because understandably as you say when children have had a very stormy start (that’s how they described Lily’s start) and it was stormy, she did have lack of oxygen and she did have brain bleeds, and if you just read the reports you probably didn’t think that she had a great outlook, and certainly unfortunately a couple of the doctors we spoke to in the early days gave us very dire outlooks, which just made us feel sick to our stomach.
Now of course they may have been doing that because they couldn’t foretell what her future would be, but it really helps to have some sense of the positives. And yes that doesn’t mean your child will walk and we’ll get there in 5 years’ time, but small things as you say, “look at her she’s reaching up, she wasn’t doing that last week” and these really are encouraging things.
As a parent, I don’t know where this expression comes from, but I stopped reading baby books and somewhere I read about little babies like Lily reaching “inchstones” instead of milestones, and it’s so encouraging and we think she’s the cleverest little thing.
Over time – so you mentioned in the beginning maybe you help with positioning, creating awareness of her body, different movements that she may not be experiencing because of her CP – but it’s evolved over time and maybe you can talk a little bit about that? We’ve begun to work on transitions, from lying to sitting or sitting to kneeling, or learning to roll – all of it helping her to plan how to coordinate her movements and create sequences that she is now (even though she still can’t perfect) she is still slowly beginning to put together. Could you maybe talk a bit more about this approach, and why you do it from a neurological perspective?
Jessica:
I personally have a very functional or developmental approach. So I know what typical development looks like and I try to support every child along this trajectory as best they are able. For example, typically developing babies born at term, start in a very flexed position…
Robyn:
Sorry Jess, can you just clarify what you mean by flexed?
Jessica:
Ah sorry, yes, in the womb your baby is in a foetal position, or curled up I guess – they have their arms and their legs in by their chest, I’m doing the action but you can’t see. They’re essentially in an advantageous position to find their arms and legs versus babies that are born early or with more muscle tone or are more floppy, they tend to have their arms out by their sides, and particularly with monitors and leads and things, it is difficult for them to then have the same exposure to their body parts. As I was saying earlier, they’re developing this map about where their bits are, so if they have spent all of their life with their arms out by their sides and their legs out by their sides, only looking in one direction it’s difficult for them to have the same exposure and therefore development.
So yes, they start in a flexed position, they start to develop some midline control, hands together, hands to their mouths. They start to develop some head control, they might start to reach for toys, learn to roll, develop their upper body strength on their tummies. So that’s kind of a typical trajectory. So then I will look at where a child is within that trajectory really early on and they’re just lying on their backs on a bed or on the floor. They haven’t really worked out that they have arms or legs, so they’re out by their sides and in that case it is very much about supporting them and encouraging play and positioning to expose them to their body parts.
Then once they’ve got that, and not all children do, but often they do and it takes time, you then move on to the next thing. So you say, okay they’ve got that, we should try and do a little bit more tummy time and expose them to being in different positions for their head control, or build up their upper body strength and that sort of thing. And then you as much as possible make it functional, so you are not just placing a child in that position, but if they were typically developing how would they get there – they might roll, so rather than just placing them on their tummy why don’t we teach them how they might roll to their side, using toys to get their attention. Helping them, but also helping them the least amount that you can to get them to do as much as they can.
I guess that’s quite specific for very early development, but it applies all the way along, I think meeting them where they’re at and seeing what they like and their interests, and see what is the next step for them and how can I support that. What difficulties are they having in the next step, is it strength, is it coordination, is it a neurological tone issue (that their bodies are so rigid it’s hard for them to reach); what ways can I support them in reaching that next step.
Robyn:
So this is a tricky one, we’ve talked about it a lot, is “how much” physio does a child need (and you know practice makes perfect as you’ve often said, if you think about any of us training for anything, the more you do it the better you get at it). But you know, for most families very regular or any private therapy can be really expensive, and often public services may be available, but offered only a couple of times a month if you’re lucky.
Now what can parents do at home to help their children work on what they are learning in their therapy sessions so that they get the best value out of it?
Jessica:
In an ideal world children would be able to have therapy daily, in the morning for a couple of hours and in the afternoon for a couple of hours, or whatever they could tolerate from an endurance perspective. And we’re not only talking about physio, because there’s speech, there’s OT, there’s other therapies as well. So it’s difficult to be able to achieve the optimum amount of therapy because it is prohibitively expensive, it’s difficult. So I think there’s a few things you can do to make the most of the therapy sessions you’re having:
Make the most of the time you have with your therapist (whether it’s public or private) – writing down, or videoing or taking photos of what’s happening in the session, particularly early on. There’s a few pieces of equipment that they have, but you can often put things together with what you have at home or buy quite cheaply to be able to support children in different positions. So make as many notes as you can as you’re going through the sessions.
Ask for programs or activity recommendations for home, write things down that are in the sessions but also say, how can I work on this at home more, how would you recommend we do this at home?
And then do it.
You guys are brilliant at practising the things at home with Lily. And it makes a big difference because even coming once a week is not enough, because you need to do it every day. So make sure that you are doing it at home, and as a primary caregiver, you carry the burden of everything, of sleep, of feeding, of therapy, everything. So trying to incorporate as many people that support your child.
You don’t have to do all things at one time. You don’t have to think oh we’re working on sitting, rolling, transitions, head control… I’ve got thirty minutes let’s do these things. You won’t have a good experience because your child will get upset that they’re being rushed through things and they don’t understand. So just pick a couple of things and try and work on them in the morning, and a couple more things in the afternoon.
Robyn:
I think that is very wise, I know certainly Lily gets very cross with me (I am a bit like that, we have got to do this and this and this, and she’s like No! but I’m playing with that toy mummy, leave me alone!) so you do have to just also understand their tolerance. You know she’s still a little baby effectively, she’s 21 months old and she works really hard, but maybe 40 minutes is enough and then just relax.
I think that is important to have breaks in between, and maybe that leads quite well into my next question which is about sensory integration, what it is and how it fits into the picture.
Jessica:
It was founded by somebody named Jean Ayres who was an occupational therapist, psychologist and neuroscientist. She has an approach called Ayres Sensory Integration® (ASI) and that’s what you can become certified in. Originally it was for children with learning, and behavioural challenges, and then children with autism, but then it has progressed and been broadly applied for children that have physical disabilities. Essentially its looking at how we integrate our senses – touch, taste, vision, hearing, smell, and then the lesser known senses of your vestibular system ( or movement sense), your proprioception system (which is your body position sense), and also interoception (which is your internal sensation, so feelings of hunger, feelings of pain, feelings of needing to use the bathroom, those sorts of things).
I think for me the predominant things that I look at are the vestibular sense and the proprioception for body position.
It’s atypical for physios to do this training. I was encouraged by my previous employer to do this training, and when I did I was one of two physios in a class of 30 odd occupational therapists, which I find mind blowing because now that I’ve done it really makes a whole lot of sense that our sensory systems underpin all of our movement.
Typical or atypical, we have things that help us be regulated, or dysregulated. You know if you’re driving in a car and the person in the passenger seat turns the music up and you’re trying to concentrate on directions and you get a bit frazzled, and “ah can you turn that down”. Just simple things like that are the same for children. If we’re trying to get them to concentrate on a task, but we’re saying “okay, okay, yeah, go! go! go! and we’re giving them too much input, that can not be regulating for them. And similarly you know if we’re trying to get them to move, and they really don’t know where their body is in space, it’s important to take a moment to give them some feedback, and help them to know okay here’s my arms, here’s my legs, we’ll use some deep pressure, or we’ll do some heavy work to try and encourage that. Yeah it’s a really important piece of the puzzle.
Robyn:
So, if I may Jess, one more question before we close off. What are some of the most-asked questions you get from parents, and how do you respond to them?
Hmm it’s a tricky question, I get a range of questions because every family’s journey is different, and I meet children with varying challenges and at different stages along their journeys, I guess the couple I get the most are:
1. Will my child ever…walk, talk, crawl – that sort of thing. And I guess my answer to these questions is always, that I wish I could answer with 100% certainty, but in all honesty nobody can. And I think that’s important to remember because some people try to give you that answer and they tell you ‘”no, they’ll never do this, or “no they’ll never do that. Sometimes they might be right, but also why not aim for the best, let’s not rule things out yet. We’re still seeing what development is going to happen, so that’s important. You know I will always focus treatment on their current level of function and working towards the best possible outcome.
2. I think another question I get is how long will my child need therapy, or how much is the right amount (we discussed before), which again is a tricky question because all children are different. Children with complex needs or many challenges will likely need therapy throughout their childhood and even into adulthood, but the frequency can really change, and play and downtime is also really important.
Interspersing bursts of therapy with some time to consolidate skills also works. And growth spurts and things like that will often mean that you need to be working on certain things, and then there might be a time where you take a break or come less often. There isn’t one rule for all. We definitely work towards individualising that, and seeing what do they need, and when can we have a break that’s important.
Robyn:
Yeah that makes a lot of sense. Well, thank you so much for taking the time to do this with me. I have learnt so much from you over the last 16 months or so and it has been really great to be able to discuss some of that here today.
As I mentioned in my introduction, Jess is the Clinical Director here at SPOT, an interdisciplinary therapy centre which has three locations in Hong Kong. They have recently opened a fantastic new clinic in central Hong Kong and I really want to wish you all the very best with this new phase, I think it’s very exciting.
Jessica:
Thanks for having me!
Robyn:
Alrighty, thank you very much and please stay tuned, hopefully we will have another episode sometime in the not too far-away future.
