Growing up with spinal cord injury

Anna-Marie: (0:04 - 0:33)

Hello and welcome to SpineCare's 40 Voices, a series of podcasts sharing stories about spinal cord injury and how each one living with it and their families and communities celebrate and experience their best lives. You'll hear myself, Anna-Marie Reyes as executive producer and Oscar Byrne as audio producer from radio 2SER-FM speaking to people living with spinal cord injury on behalf of SpineCare Foundation in Australia.

Oscar: (0:45 - 1:58)

Welcome to SpineCare's 40 Voices for 40 years podcast, a podcast about childhood acquired spinal cord injury and dysfunction produced by Tuosia Radio, the SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics. I'm your host, Oscar Byrne, audio producer at the community radio station Tuosia 107.3. In this episode, we'll be learning about key concepts of spinal cord injury in childhood and gaining tips and insights on growing up with a spinal cord injury. 

To shed light on the topic, I'll be joined by Dr. Mary-Claire Waugh, a highly experienced style specialist in kids rehab at the Children's Hospital Westmead, and Maya Dove, a youth caseworker and model who acquired her spinal cord injury as an infant. Privileged to have Dr. Waugh with me now. Welcome, Mary-Claire. How are you?

Marie-Claire:

I'm well, thank you.  

Oscar: 

That's good to hear. Thanks for taking the time to join me in the studio. So to kick things off, what are we talking about when we say spinal cord injury and dysfunction?

Marie-Claire: (1:59 - 2:36)

Well, the spinal cord connects your brain to every part of your body, so from the skin right through to your organs inside, the bones, the muscles, everything. And when the spinal cord is injured, you have an impairment of the messages from the brain to your body parts to either move them or correct their blood flow and the like. But also, you have an impairment from the skin and the nerve endings, so the sensation from those body parts to your brain. So it's sort of two-way traffic that goes up and down the spinal cord. And obviously, for this episode, we're talking about children.

Oscar: (2:37 - 2:51)

And obviously, for this episode, we're talking about children. Children are affected by spinal cord injuries. The bodies are still developing. They're growing up, you know, might be hitting puberty. They're at an age, even emotionally and mentally, they're changing. How much does that impact the diagnosis?

Marie-Claire: (2:51 - 3:52)

Well, it can have a huge impact because if you think about a normal family with their child developing, if they're very young and they get a spinal cord injury, some of that normal development is truncated. The families tend to keep their injured child more like a baby. Sometimes if it's a teenager who's already taking risks and they have a spinal cord injury, they may take bigger risks because they feel they're somewhat invincible because they've survived a spinal cord injury. But the key things really are that a child's growth and development has a natural linear development. You're always acquiring new skills and new motor skills, new learning skills, new behaviour skills, new social skills. And that still needs to continue.

At times when families are very traumatised by the loss of their typically developing child, that can hinder that normal trajectory of development. So they can either be kept young, overprotected, not allowed to take risks and the like.

Oscar: (3:53 - 4:05)

It's hard to pass judgment on parents who do that. It's a hard thing to come to terms with. 

Marie-Claire:

Absolutely.

Oscar:

What advice would you give to parents and families when it comes to maybe avoiding being overprotective?

Marie-Claire: (4:06 - 4:30)

Right from the beginning, I think the emphasis on rehabilitation is about treating the child as you would the rest of your family, your children, your expectations. Just because they, for example, can't walk, doesn't mean they can't put the participate in chores that are appropriate for their age and their ability. It's just finding the way to give them those important roles as an important part of the family.

Oscar: (4:30 - 4:37)

Does that also help socially as well for them when it comes to going on to get jobs in the future and socially?

Marie-Claire: (4:38 - 5:17)

Absolutely. The most important part of the outcome of children with a spinal cord injury is their education and how they go at school and then their subsequent training. And that can be tailored to whatever their abilities are and encouraging kids to finish school. It's a crucial part of my work in encouraging these kids to be the best they possibly can. And a lot of that is through education. If they've got better motor skills, then obviously they can do more physical activities, but their brains are intact. So their brain is their best asset. Using their brain is what's going to give the most enjoyment in life and ability to get a job.

Oscar: (5:18 - 5:27)

And I guess that's one aspect for parents and families to come to terms with is, Will the condition get worse or better? I'm sure that's something you deal with constantly.

Marie-Claire: (5:27 - 6:41)

A lot of families are looking for a cure, which is absolutely natural. You know, everybody wants to have that miracle. Hope, I guess. And you never want to remove hope. So I would not say to a family there's never going to be any change. Often the changes can be really small and subtle, but they can be very significant to the point where they might be able to move a foot, for example, which then will allow them to drive a car better or something like that. After about six to eight weeks after an injury, there's a rapid decline of any new recovery of the spinal cord, which is always a devastating time during their inpatient stay. 

However, there can be significant changes that continue to happen over years that can indicate that the cord is not completely severed. It's very rarely completely severed. There are always some connections between the two. And there's that opportunity for those reconnections to make for something meaningful, whether it be able to feel that your bladder is full or that there's a nail sticking in your foot or that you can move your wrist or fingers better than you could previously. So all those things make for a big impact on function.

Oscar: (6:42 - 6:52)

We've all experienced growing up as puberty. What role does that play with spinal cord injuries and learning about sex and your body and becoming comfortable with your sexual identity?

Marie-Claire: (6:53 - 7:45)

Puberty is fortunately these days talked about a lot more and taught more in schools, which is fantastic. And all of that should happen with the rest of the class. There are differences clearly for children or young people who are embarking on a sexual life that they need to be aware of, because of challenges. Puberty, however, is part of childhood development, and it will happen. And encouraging kids to explore their own identity, their sexuality, their feelings and their relationships is an essential part of that. And letting the kids proceed with those activities is really important.

And ways to support families would be linking them up with other families who have kids who have had a spinal cord injury or just linking them up with other kids who are supported in the community to work, play and be more independent. That helps enormously.

Oscar: (7:46 - 8:00)

Yeah. And I guess that goes back to what you were saying before about those expectations. And when it comes to children understanding and wrapping their head around their injury, it's not an easy thing even for adults, as we've talked about it. How can they really wrap their head around it?

Marie-Claire: (8:00 - 8:40)

Great question. We use a lot of aids such as books, models. We have a skeleton model and then we have bits and pieces that are coming out of it which represent the nerves and spinal cord. And so we can show kids what it looks like. The little kids, it's much harder. So we use dolls to show them about the brain and how their body works. But for the older kids, they cope and deal with knowledge extremely well. So you just use real anatomy and real books and models and they understand incredibly well.

Oscar: (8:40 - 8:51)

In terms of advice for parents, what do you think is most beneficial when it comes to helping them get through it and then as a result, helping their children get through it?

Marie-Claire: (8:51 - 10:02)

I think that the children will often be ahead of their parents with their understanding of what's going on, even though they might not talk about it. They get it faster than parents do. I don't think they grieve the same way that parents do, but they get it. They know they can't move their legs and they haven't moved for a long time. So therefore, they kind of just get on with life. Children are amazing in that they just live with, deal with their abilities and use them to the best of their capability. So kids will often get it that they don't have a certain type of function or level of function or level of ability, but they will work out a different way to do something and achieve the same outcome as their peers. 

Parents are wanting them to do what all the other typically developing kids are doing and are sad about the fact that they can't do that. But the kids are not sad. They're saying, but that's how I am and I'm doing it. I know whether it be riding a motor scooter or electric bike or car or going out to the movies, getting around, getting into trouble, they work out how to do these things and get on with it. 

Oscar:

Thank you so much, Mary-Claire, for joining us.

Marie-Claire: (10:02 - 10:09)

It's been super insightful. Thank you. Great.

Oscar:

Thank you. Now, it's an absolute pleasure to welcome Maya Dove to the podcast. How are you, Maya?

Maya: (10:10 - 10:12)

I'm doing well, thank you. How are you?

Oscar: (10:12 - 10:15)

I'm very well too. Thanks for joining the podcast today.

Maya: (10:16 - 10:17)

Yeah, thanks for having me.

Oscar: (10:17 - 10:26)

My pleasure. So just to start things off, let's get to know a bit about you as a person. What do you do for work and what are some of the things you love?

Maya: (10:27 - 10:38)

Yeah, so I'm a youth caseworker specialising in youth homelessness and I'm also a casual model and in my personal life, I love to just spend time with my dog and go out with friends.

Oscar: (10:38 - 10:44)

It's a pretty interesting combination of jobs there. I'm not sure a lot of people can say that they're a model as well as a youth caseworker.

Maya: (10:45 - 10:54)

I know. It's almost like left brain and right brain. It's so opposite ends, but I do really like it, seeing the different sides of society.

Oscar: (10:54 - 10:56)

They're so rooted in reality.

Maya: (10:56 - 10:58)

Yeah, yeah, yeah, exactly.

Oscar: (10:58 - 11:14)

To shift now a bit, you were diagnosed with a spinal cord injury from a tumour when you were six weeks old. How did you come to wrap your head around what a spinal cord injury even was and what it meant for your daily life?

Maya: (11:15 - 11:55)

Yeah, I don't really recall a time where, say, a light bulb went off. I don't really recall that ever happening. I just always knew that that was my disability, especially growing up in the children's hospital. The story around my disability and my diagnosis was always said to me from a very young age. So even by the age of six, I can remember saying, Hi, my name's Maya. This is my disability. I've got this level of spinal cord injury. And yeah, I always knew what that meant. As children are, as I aged, there were different things that made me realise what it actually means to have a spinal cord injury.

Oscar: (11:55 - 12:01)

Yeah, I can imagine that led to a fair amount of grief and frustration as you got older.

Maya: (12:02 - 12:03)

Yeah, 100%.

Oscar: (12:03 - 12:04)

How did you manage that?

Maya: (12:05 - 12:58)

I think grief and trauma for children is so very different to what you see in adults. And I think that's something that I'm also really passionate about speaking on at the age that I am, because I actually never really had that kind of mental health support around having a spinal cord injury. But I think it kind of just came as time went on and my parents did their best to support me when I would come home from school crying, because my kids would say things or I wasn't invited to a party because of access. My parents did their best to try and support me through that. 

But definitely as I got older, the grief did manifest in different ways. I have been with a psychologist since I was 16, just to work through and discuss kind of the mental health challenges that have arisen.

Oscar: (12:58 - 13:14)

I guess you mentioned your parents there and just to go back a bit to growing up and you got that younger age. What did they do to help you learn about what had happened to you and really get you through those tougher times as you were kind of getting a bit older?

Maya: (13:14 - 14:08)

I'm really fortunate that my parents really very focused on me being treated like every other child of my age. So even being a toddler, they would always allow me to try their best for me to have the exact same opportunities. They were one of my very best advocates. But I think as time went on, different challenges arose. But I think one of the biggest things that they did was just putting me into sport and bringing other people to kind of speak with me and putting me into places where I would meet other kids. Meeting with them was really beneficial for both them and me because I got to play and be a kid with someone that had the same needs as I did and they were able to discuss at a parent level kind of the challenge that they were facing.

Oscar: (14:08 - 14:20)

Was there anything that would have been really helpful? Maybe like a key message to give for parents to better support their kids? Something that you would have really welcomed as a child from your parents?

Maya: (14:21 - 15:41)

I think parents having discussions with peers would be really beneficial. So if like adults who have been through their life of having a spinal injury from a young age, I think listening to those people to try and figure out how to best work with your child, I think that's one of the biggest things that would be really beneficial for parents. If they know what their child's feeling, I think, and what their child's facing. Because even though parents know and they see it day in, day out, they're not living it. Even though you see it and you live it with them, there are some little things that can really bug a child. Just really listening to your kids.

I think not downplaying the amount that children feel. I think that's one of the big things. Even though children can't articulate their frustrations, but they have the exact same frustrations as adults. It just manifests in different ways. I think that's one of the really big key things I think that parents should kind of take into consideration that sometimes their behaviour isn't bad. It's just them dealing with what's going on around them as adults would. And sometimes you won't know and you'll miss that.

Oscar: (15:42 - 15:47)

Yeah, I think that's amazing advice, Maya. And I've got to say a big thanks for joining the podcast.

Maya: (15:48 - 15:49)

Thank you. Thank you so much.

Oscar: (15:50 - 16:23)

See you later. Thanks. 

You've been listening to Spine Care's 40 Voices for 40 Years, produced by 2SER Radio. You can subscribe wherever you get your podcasts. This series is recorded in Sydney. We acknowledge the Gadigal people of the Eora Nation as the traditional owners and ongoing custodians of the land where we record this podcast. We extend our respect to the traditional owners of the lands that you and our guests join us from. I'm your host, Oscar Byrne. Thanks for your company.

Anna-Marie: (16:27 - 16:43)

In this week's podcast, you just heard the voices of guests Mary Claire Waugh and Maya Dove speaking to Radio 2SER's audio producer Oscar Byrne, and ending this week's podcasts. I'm executive producer Anna-Marie Reyes - and see you in the next podcast.