TRANSCRIPT:
ROBYN
Hello, a belated Happy New Year, and welcome to the second episode of the SuperLily Podcast.
Today I am so excited to welcome Dr Gillian Saloojee, who is an experienced physiotherapist in South Africa. She has a special interest in developing and strengthening therapy services for children with cerebral palsy living in deprived and disadvantaged settings in Africa. She trained at the Bobath centre in London and has a PhD from the University of the Witwatersrand. For over ten years, Gillian was chief physiotherapist at Chris Hani Baragwanath Hospital in Soweto where she was responsible for paediatric physiotherapy and the cerebral palsy clinic.
In 2005 she founded Malamulele Onward, a not for profit organisation in South Africa that provides services and solutions in rural areas for children with cerebral palsy and their families. Whilst she handed over the leadership reins at Malamulele Onward in 2019, under her guidance over 14 years, they reached thousands of families delivering therapy and parent to parent training amongst other things. Gillian is now working on a new project focusing on teenagers and young adults with CP.
Gillian, a warm welcome to the SuperLily Podcast, it is wonderful to have an opportunity to speak to you, and thank you for agreeing to join me today.
GILLIAN
Robyn, it’s my absolute pleasure and I’m really delighted to have been invited. As I’ve said to you before, your website and blog post are just superb, I think you really have the ability to articulate and capture the feelings of a mother a new mother of a child with special needs. And I think what has really struck me about your blog and your website is that the emotions and the journey that you describe are stories I’ve heard from so many other mothers and I think your journey is so common to all mothers no matter their setting. And you have really been able to capture and articulate that, so I am delighted to be talking to you. Yes, from the other side of the world, so thank you so much asking me to join you today.
ROBYN
Well thank you Gillian I am so pleased you could join me today all the way from sunny South Africa, and thank you for your incredible comments about the blog. As you know it is aimed at parents and I think that what you have said really validates what I am trying to do which is to provide other parents with information, hopefully community and a parent’s perspective.
Now whilst our journey, or the early part of it certainly, has been very challenging, we have been fortunate to world class resources at our disposal here in Hong Kong. I can only imagine what it must feel like in parts of the world where there are very few resources for you, if any at all. Parts of the world I know that you have dedicated your career to servicing.
I know of course you are no longer leading Malamulele Onward, but with its focus on empowering parents it would be great if you could briefly share some of your experience there with us. Could you tell me and my listeners a bit more about the experiences of parents in the areas you have worked in, and what it was that led you originally to start Malamulele Onward?
GILLIAN
Robyn I must be honest and say, as in life, you know things don’t always work out as you had planned. It was never my intention to start an organisation. I had been a physiotherapist working for many years at the cerebral palsy clinic at Chris Hani Baragwanath hospital in Soweto, where we literally saw hundreds of parents every month and thousands of parents every year. We were a small team of therapists. I mean we used to see 20 or so parents every morning and you just have to wonder, what on earth are we doing, what difference am I really making in the life of this child and the caregiver, and is what I am offering really the best that I can offer or the most appropriate that I can offer.
And so I left the hospital to do full time research and I had the luxury (and it really was a luxury) of just being able to talk to parents around the country, well in 2 provinces, in the northern part which is a more rural part, and in the urban part around Gauteng. And I really wanted just to listen to the story of parents and try to understand something of their journey.
One of the places that I went to was Malamulele hospital, where I had been years before as a young therapist when I had worked in a rural area. And what struck me there so forcibly when I arrived to interview the parents, there was a room full of thirty parents there was no therapist at the hospital, some therapy assistants, thirty parents and their children. There was this quiet sense of desperation that was really palpable, parents longing – not just to tell me their story but hoping that I would be able to help them.
When I saw the range of children that were there, as a therapist, because I had been working in this field for so long, I could just sense that this was a group of children that had so much potential and that potential was not being realised and so I thought it won’t take very much to actually make a lot of difference here.
That’s how Malamulele started, sit was starting with saying these are kids that have potential. How do we help them realise that potential. So I got together with a few of my friends, all therapists experienced in working with CP, I had a good friend in Canada that offered to make the funds to make that first journey possible. And fortunately I recorded what we did and we were amazed that in the space of a week, what a difference you could make in a child and the children’s progress. Fortunately I captured it, I did before and after measurements and we were just astounded at what was possible. And that started this whole journey of saying, how can we make it possible for all children in this country to access the kind of services they need and that will make a difference.
Yes, my entry point into Malamulele was through the children themselves, but the more work that I did, the more I realised how little I really understood about the life of the children and their parents and about what to do that would make a sustainable difference. So it was about learning what were the skills and knowledge I had to transfer across to the parents, and that for me was when the real work of Malamulele started. And it was about making sure that parents understood or had information about what was wrong with their child, what had happened to their child.
A space also where they could share their heartache in a safe space with other parents. You’ve described in your own blog, the journey that you went on that was really frightening at times. About this journey of discovery, why isn’t my child like other children, what’s happened. And a there were a few themes that kept cropping up, and it was the guilt that parents carried. The guilt they carried and saying that it must be my fault, there is something I have done, I could done something that could have prevented this from happening.
That guilt was sometimes compounded by the family, particularly the inlaws or the father’s family, saying in our family we don’t have children like this, clearly it is something you have done. So there was an enormous amount of guilt that parents carried that somehow this was their fault.
The next thing I realised was how isolated parents felt. They often said I felt I was the only one, it was only me, I don’t know other children like this, there hasn’t been like this in our family or our community. I feel like the only one.
And then thirdly it was a sense of futility, to say that there is no hope, my own future has been put on hold, I don’t see any hope for my child at all. Parents were caught in a cycle, or this trap of hopelessness and despair. And that had to impact on their children, and so part of what Malamulele did, our work was to try and break that cycle. To break the cycle and to say how do we let mothers know particularly, firstly you are not on your own here, it’s not your fault and how do we work together and give you the knowledge and skills that will help you to make your everyday living with your child a bit easier.
ROBYN
Gillian, everything you’re saying resonates with me so much, because wherever you are in the world, the feelings you experience as parents are very much the same.
Now you have alluded to some of this already, but could I ask in your experience, what it is that parents struggle with the most when they get a diagnosis for CP for their children, and then on the flip side of that, what it is that empowers them the most? What have you found to be the most powerful tool that you during your career have been able to give parents?
GILLIAN
Absolutely – it’s information, and what you’ve said that need for information is universal. So what do we mean by information? It’s information that informs you about why did this happen, do we know why it happened, do we know what the cause was or equally so what didn’t cause it.
And working in the populations that I worked with, which was a cross cultural population. There was a lot of ignorance about brain damage, cerebral palsy, disability – a lot of ignorance and a lot of stigma. And also a lot of myths around it, so it’s really important to debunk those myths and say these are things that do not cause it. Sometimes we may not know or be able to answer the question why did your child get brain damage, how did it happen, how could it have been prevented – we can’t always answer those sorts of questions, but there certainly facts that we do know. It’s not your fault, you’re not to blame, it wasn’t because you made your ancestors angry, it wasn’t because someone has put some sort of spell on you, or there’s witchcraft.
You know, to try and dispel those things that eat up at parents and make them feel very guilty. Or people often felt it was because there was a lot of tension or stress around their pregnancy, or a lot of stress and unhappiness in relationships that they were involved in and somehow that stressed caused the problem.
So it’s important to have information to let parents know what didn’t cause the problem and what might have contributed to it. So it’s information around the cause of the problem.
But also information around what does a diagnosis of CP mean. Helping parents to understand the nature of the condition, and equally so information that will help them in their daily lives to make every day as easy as possible, but at the same time know that as they do every day things with their children, whether it’s bathing, feeding, talking, playing – to do it in a way that’s going to be helpful to the child. That for me was really important – to give parents those tools that can make every day living easier, but in a way that really helps their child. And to get away from the idea that if you do lots of exercises your child is going to get better.
Parents also need information for the future. Cerebral palsy if you know the definition, the brain damage itself is not going to get worse, but it is not going to go away. So cerebral palsy is a life-long condition. So how best do we prepare parents for a lifetime of caring for a child, obviously depending on the child’s needs.
So it’s information and knowledge, and also for me as a therapist to transfer my skills. It’s part of my responsibility to transfer that knowledge and skills to parents. Because parents are the experts. All I can do is say how can I help you to be the best parent you can be because we want your child to be the best that he can be both now and into the future. So what is it we have to do now that is an investment also into the future.
ROBYN
Gillian, that’s so helpful and speaks to me on so many levels but I think what is very powerful and leads quite well into the next part of the discussion I would like to have, is preparing for a lifetime of needs, preparing for the future. And of course the focus of your new project is teenagers and young adults with CP, and it’s given me a lot of food for thought. I follow many international organisations focused on CP, and it’s very interesting to me that even in developed countries, public services beyond childhood seem to drop away, or are very few.
I know that in your experience in South Africa this is very critical. Could you tell me a little bit more about why you think this age group receives less support than children under 8 years old?
GILLIAN
Robyn, this is an area that I have been conscious of for some time, what happens to children as they grow older. Based on what I’ve learned from the families I have been working with, because I have been working with families over a long period of time, watching them and their children grow up, now to becoming young adults. The things I have seen is that, what happens as children get older – there’s the emphasis (as you have rightly pointed out) – there’s so much emphasis on the value of early intervention, and I agree with that wholeheartedly. The first two to three years of a child’s life, they talk about the first 1000 days are absolutely critical, that’s when your brain is at its most malleable; neuroplasticity has a huge role to play. So there has been a huge emphasis on early intervention, which is important. But that has been to some extent at the expense of what happens when a child gets older. The definition of CP says this condition is permanent. A baby with CP is going to become a teenager, a young adult, CP does not disappear.
So to go back to your question, why are there so few services for children over the age of eight. I think firstly there is the whole emphasis on early intervention. Also when a child is young, everyone is full of hope, parents of full of hope and as time goes on one begins to realise, I am not seeing the difference I want to see and so parents lose a bit of hope and say what’s the point, I’m not seeing the improvement I was expecting.
Then therapists also have a huge role to play in this and the way that we are trained as therapists. We train therapists how to treat children, we don’t train them in how to treat teenagers and adults. And so therapists think, and I’ve heard this so often, we’re going to discharge you from therapy, I’ve taught you everything that you need to know now you must go on and do it. So children are actively discharged. Or therapists say, we have a limited number of resources here, our emphasis is going to be on the younger child. So therapy is not being offered.
So you have a combination of the family that doesn’t see much difference, a therapist that says I’ve done all I can, and my emphasis is now on the younger child. And then of course the child is getting older and heavier, and if we are talking of children with more severe disabilities that aren’t mobile, getting around is very difficult, and if you don’t have a car and you’ve got to rely on public transport – most children are still carried on their parents’ backs, even though there are buggies and wheelchairs around because that costs extra. Getting a child in a buggy, on to a taxi on to a bus it’s not easy. And so if your child is becoming a teenager, it’s too difficult, you yourself are getting older, your child is getting heavier, it costs a lot of money. The family priorities may change, maybe there’s younger children, younger siblings coming along, the mother doesn’t have all the time that she used to have if the child with special needs is her first child. And so family priorities may change and also the resources that were available to spend on taking your child to the hospital, or to get the wheelchair fixed, or go to therapy… there are now different family priorities.
So I think there are a lot of reasons why there are very few if any services available to children over the age of eight. But as you say, it’s worldwide. The whole transitioning to an adolescent, or teenage and adult service, worldwide people are recognising we have a lot of work to do.
ROBYN
Well thank goodness people are realising, and thank goodness for people like you who are now beginning to turn their attention to this group. It would be great if you could tell me what it is your new project aims to do, and also about the organisation you’re going to be cooperating with?
GILLIAN
I’m delighted to be able to work with Timion, which is another non-profit organisation that was started around about the time of Malamulele Onward. Daniel Meyer and his wife, Anika, who started Timion were some of our early volunteers. Daniel is an orthotist and a carpenter by trade and what they really saw was the huge need for equipment and assistive devices. They started their organisation primarily to supply and make available excellent and beautiful and durable and affordable assistive equipment, and so that’s how they started and they have really grown in what they have done.
I have partnered with Timion and my plan is to follow up and trace 500 children that I – because Malamulele I started in 2005 – that’s 15 or 16 years ago. And I have a very ambitious project, in that there are about 500 children that I knew in the first years when we started Malamulele Onward and I want to go and find them. I want to go and track them down and these are all in deep rural areas, we’ve got to find the families, track them down. Firstly find out how many of the children are still alive, which is also important, and those children that are still alive and are now teenagers, where are they now, what’s happened to them? What’s the quality of their life like? How are their parents coping? Are any living of these teenagers living on their own, are they living independently, are they still dependent on their parents? Do they have assisted devices and equipment? Most importantly, I suspect that many of them may be in pain and a lot of discomfort as their bodies have gotten older and they’ve had probably no access to therapy at all since about after the age of 8.
What in these settings where the kids, or the teenagers and the young adults aren’t getting any therapy, what therapy do they need and what would a therapy programme look like? And that for me is the ultimate aim as well, not just finding out about the situation, but saying, what intervention is needed? It would have to be home based, what would it look like, who will do it, how will we make it possible and will it work?
So it’s an ambitious project, and as I say I am delighted that I have a partner in Timion, and I’m also going to be doing it together with a team of international researchers. I’m hoping to get together a team that we’re going to look at this together. This has not been described in an African setting at all, so it s new work for all of us, it’s about firstly finding information and then using that information to improve quality of life.
ROBYN
It sounds like quite an undertaking Gillian and also very relevant to global CP research. Obviously something like this will require resources and I know that you are at very early stages on the project and that fundraising is now a key priority for you to get going. What types of funding are you looking for at this point and what would be the best way for people to contact you to provide this type of support?
GILLIAN
This project can only happen if there is funding as you’ve said. And the funding it is going to be a costly project. The reason that makes it costly is that the time it takes and distances to travel. These are fairly remote places that I’ll be going to, inaccessible places, so you need to hire a vehicle, something like a 4×4 to actually get there. So it’s time just to track the teenagers down, and when you’re there, I really want to be able to give a piece of equipment to every single teenager that I find. That when I find them I don’t just say, hey thanks for the information, but that I leave their home, them feeling more comfortable, than when I arrived. So I want to be able to give each child that needs, a chair to sit in, not a wheelchair, but what we call a posture support chair that will accommodate their posture and help them to sit comfortably, and to be able to seat them properly.
Then also to be able to then go back and design an intervention programme. So my goal is there are 500 teenagers I want to follow up, and I’ve estimated that it’s going to cost me approximately USD500 teenager that I find. So one could sponsor a teenager, or sponsor a chair for a teenager, sponsor a trip for a teenager . That’s the kind of funding that I am looking for. To sponsor a teenager – and I say with USD500 you’ll be able to track them down, give them a piece of equipment, and make sure that equipment is fitted with them and at the end of the day provide them with a programme.
So I don’t have a website but the easiest way to contact me is through my email address, which is gillian.salojee@gmail.com and I will then channel you through to Timion.
Another way I am trying to raise funding is to go to try to raise some research funding because this is a research project as well. So I am looking at two different avenues of funding.
ROBYN
That’s great Gillian, I will of course include all the information on the SuperLily blog and in the podcast transcript so if anyone would like to contact you for more information then they can do so. From my perspective I would very much endorse this project. I’m not an expert, but based on your past work at Malamulele Onward I’m sure that it will be done with academic rigour and gain visibility through your international research partners, and also of course you will be focusing on providing interventions for the group young people themselves, which is very important. I look forward very much to following your progress.
So, as a final question, if you could give parents of children with CP one message, what would it be?
GILLIAN
The word “celebrate” comes to my mind, and that is to celebrate your child. Celebrate every tiny improvement that you see in your child and I think, you know Covid has had a huge impact on all of us this past year. It’s shown us how unpredictable the future is. We have to celebrate every moment that we have with our child, and celebrate our child for who he or she is. That first and foremost it’s your son or your daughter. Celebrate, celebrate and enjoy your child.
For parents with children with special needs the world is clouded with challenges throughout your life, you know going to school, going to university – there’s a lot of challenges every step of the way. It is really important to celebrate who your child is, that your child is unique and that your child is special, and just enjoy, enjoy and love your child.
The other word that comes to mind also begins with a “c” and that is “compare”. Don’t compare your child to others of the same age. Your child is unique and they are on his or her unique journey. So celebrate who your child is for what they are and what they can do, and not what they can’t.
My key message is just celebrate, enjoy and love your child.
ROBYN
Wow, Gillian, what a perfect message what a perfect way to end this podcast. You know it really gives me so much encouragement. We really celebrate our Lily, our daughter, and we have learnt to celebrate her little successes. I’ve spoken before on this podcast about “inch stones” not milestones and not to compare her to others. Although I have to say that is not always easy to do.
And thank you so really much for joining me today. Caring for a child with CP is not an easy journey for parents, wherever you are in the world as we have discovered today. Thank you for describing especially for us the plight of parents in these underserviced communities as you have seen them in your career, and for all the work you have done and continue to do to help them and their children. Your dedication to these young people in South Africa is truly humbling.
Gillian, I wish you all the best of luck with your new project and let’s hope for goodness sake that Covid gives us some respite this year!
GILLIAN
Thanks Robyn, and Happy Birthday to Lily for next month!
ROBYN
Oh gosh, thank you so much! For sure that is a milestone we’re going to be celebrating!
To my listeners, just to reiterate, if you would like to support Gillian in her research and proposed project for Teenagers and Young Adults with CP in South Africa, more information can be found on the SuperLily blog and also in the notes for this podcast on Anchor.fm.
Thank you for listening and stay tuned! Goodbye!
