Discovering strength and self-navigating psychosocial aspects of childhood spinal cord injury

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Anna-Marie 0:16

Music, Hello, welcome to SpineCare's 40 Voices for 40 Years podcast - a podcast about childhood acquired spinal cord injury and dysfunction, produced by 2SER radio on behalf of SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics. I'm the executive producer for this podcast series, Anna- Marie Reyes at the community radio station 2SER 107.3 FM. This podcast is titled Discovering Strength and Self-navigating the Psychosocial Aspects of Childhood Spinal Cord Injury.

Thomas 0:57

Always been open and honest about my disabilities, like there was a stage where I wasn't comfortable talking about it, and I'd just walk away and just leave the conversation and just not do anything about it. But as I grew older, like I love talking about it, I love getting the awareness out there. It's not easy, but yeah, it will just take time for you to get comfortable.

Anna-Marie 1:23

And you just heard the voice of Thomas Wiggins there, who is an accomplished young adult who cherish spending time with his extended family, also a rugby league fanatic, and he loves playing golf. But before that, you'll hear from guest, Stephanie. Tuck Stephanie is a talented rehabilitation social worker with extensive experience in both adult and pediatric community settings throughout New South Wales, specializing in neurological conditions, including spinal cord and brain injuries. She possesses a deep understanding of the far reaching effects that injury, illness and disability can have on families and communities.

We warmly welcome our next guest, specialist social worker Stephanie Tuck. Steph has more than a decade of experience in pediatric and adult spinal cord and brain injury rehab, and currently works across both the public and private sectors. Steph's knowledge and experience is enriched by her own daily adventures as a parent to young kids aged four and six. It's great to have you with us Steph.

Stephanie 2:37

Thank you. It's a real honor to be a part of the podcast. Thank you so much.

Anna-Marie Reyes 2:42

Spinal Cord Injury is readily conceptualized as a physical condition. Can you please explain Steph why it's so important to recognize what we call the psychosocial factors, social, emotional, mental and spiritual influences on the young person's family experience?

Stephanie 3:02

Yeah, when someone has a spinal cord injury, and especially a child, it rocks your world. It's not just a physical injury, it absolutely impacts you emotionally. There is so much stress and trauma and fear and grief and loss that is attached to having a traumatic injury, and whether that's through oncology, cancer, whether it's disease, it's still traumatic. And so that has a real impact on someone's, yes, psychosocial life. So it's really important to recognize that it's something to monitor, to be aware of and not just write it off, that it's that everything will be be okay emotionally for that person.

Anna-Marie 3:49

So our listeners are more than aware a spinal cord injury for a child, whether through an accident, disease process or complications of cancer, for example, is so destabilizing and traumatic. What might a family experience in those early stages and what can they expect further down the track?

Stephanie 4:10

Yeah, so many emotions for families, just that initial shock, the grief, the loss, and just the real fear of the future for their child, their loved one, and for their family as well. How are they going to cope in the current situation and then moving forward as well? Often that parents immediately will go to the future of what is, what's going to happen? A lot of the what-ifs, and then just being in the hospital system is a traumatic experience for anyone, let alone a young person or child, and the parent having to be a bystander and not having that kind of control over that situation. 

So whatever's going on for the parent is often also going on for the child as well, in terms of just that shock, grief. The it's a scary place. Being in hospital. There are lots of people coming and going, nurses, doctors, all the Allied Health staff, kind of poking and prodding and asking so many questions. It's super foreign for anyone. So I guess that's what happens in those initial phases, is and then families are often in hospital for kind of six to 12 months after a spinal cord injury. So it means the parent might have been sitting, sleeping at the bedside, or sleeping in the hostel, or at Ronald McDonald House for ages, for months of family not being together. 

And so there's lots of routines and comforts that have just been lost and been having to, have to be put by the wayside. And so it's just kind of survival mode on how can we get through this stage in hospital and then going home from there, it can be so exciting in the hospital, you work really hard to get home. That's the real big goal is, let's get you home. Let's, let's get you back into your normal space. 

Often families have told me they've gotten home, and then there's also this kind of oh no moment of This isn't going away. This is ongoing, and that often we find that there might be a drop in mood, like for family members for the individual child themselves, because it's the realisation that this isn't going away. We've got home from hospital, but all those supports, that nurse that I could buzz, the doctor that I would see on a weekly basis, and therapists, they're not here every day, and so I've got to do this on my own, or with strangers coming and going if the child needs carers. So these strangers coming in to maybe do care routines, catheters, pal care, it's super invasive, and so it's certainly another shock to the system, another grief that people might go through as well. Recognizing this is not what I had hoped for my child's life and for my life and for my family's life. 

So it's another, yeah, a real grief and a real adjustment and a real a real sadness for some families as well, recognising, Alright, how do we then get into this long term new routine, this new life as well. How do we return to school? What kind of equipment? How will my child reintegrate into life? How will I as a parent or caregiver reintegrate into life, whether that's returning to work, whether that's needing to take more time off work, yeah, and how the child is going to even just carry on with their previous schooling, or is it if someone has had their injury in preschool, going back to preschool and then going into the the next phase of schooling as well? 

So it's a real frightening time. At every milestone, there is often a grief attached to it, and so it's not uncommon for this wave of grief to hit children or parents and caregivers again at each milestone that a child would developmentally would meet, it looks really different for their child. And so that is absolutely a huge adjustment and grief and sadness that people will face. And I guess I think the biggest thing is the other thing is frustration. I think I should also mention is that kids with injuries, anyone with with a new disability, there are so many frustrations of, Oh, I used to be able to do this, and now I can't, and that's really hard to grapple with, for parents to have to manage that for their child as well. It's that frustration and anger that goes along with the sadness and grief that they're experiencing. 

So we say in rehab that it's not a sprint, it is an absolute marathon. It's a journey, because it's not over overnight, unfortunately, it's long term.

Anna-Marie 8:58

So we often hear from parents that their primary concern is how their children is coping. How do children cope and what signs can a parent look out for to just check in with the coping of the child? 

Stephanie 1 9:11

I think the great thing about kids is they really are resilient. In my years working in pediatrics, it's quite remarkable how well they honestly do bounce back and get on with things. But that's not to say that it's also not uncommon for kids to have a bit of a harder time coping at different points as well. In terms of that initial trauma, it's really important to know is your child having nightmares flashbacks, in terms of like, post traumatic stress disorder and just being aware of those symptoms, and it's not it's normal for initially. 

I mean, those that first kind of month, your body is making sense, your brain is making sense of what has just happened, if they have a memory of an accident, for example. But it's when that kind of goes longer. It's something to keep checking in with your child about their dreams, their nightmares. Are they waking up from? Threatened. Are they acting out? Are they not acting like themselves? Are they lashing out a lot more, or are they really withdrawn? Are they not enjoying the things that they really used to enjoy, even if it's something as simple as their like a favorite food or a favorite kind of comfort or little game that they're able to play and not wanting to do that anymore. 

That's something to be mindful of noticing, yeah, the lashing out, the being withdrawn behavior that you know that this is not my child. I think parents know their child. They know their child best out of everyone. You know your child, so go with your gut. Advocate for your child when you know that this is not normal. This is not normal behavior for my child, and so that's where, when you're in the hospital, use those Child Life therapists, use the social worker and use the the psychologist. They're absolute great assets for helping that early adjustment in hospital and then coming home as well. 

Using the school counsellor, you've got access to the school counsellor, using your social worker, psychologist, counselor, that you can access outside a hospital if you can't access them, going to your GP, if you can't, if you're not attached to a team, if you don't have a case manager, if you don't have a the pediatric spinal outreach service, then use kind of your people. Your GP is always the best place. The rehab specialist at the kids hospitals use them to go. This is not my child. I need some help. Who can I go through? Can I get a counselor? Can I get a referral for a social worker, psychologist? 

Anna-Marie Reyes 11:32

And tips for making the child feel safe and able to freely, talk to... ?

Stephanie 1 11:37

Yes, absolutely yes. So it's really important to just let them know that what this has been a really hard time. You've done so well having to go through a, b and c, I'm really proud of you. Let them know they're loved, that they're cared for, and just to create a space that they can feel comfortable saying, You know what, Mum, you know what Dad, this has really sucked, and it absolutely does. I think we need to recognise that this is really hard journey, and it's a journey that many children, young people and families don't have to go through. And so I think it's really important to recognize that, to then allow them to be able to say, I hate this. 

And yeah, you know what I bet the parents do too. If you're in hospital, bring in those beautiful little teddy bears, special blankets. Create a bit of home in the hospital, some comforts that they love, put on some music that they enjoy, just to create a bit of fun amongst the stress and the the clinical nature of being having to go back and forth to hospital when they're outpatients or in the hospital as well. 

Anna-Marie Reyes 12:44

And then on the other side, what impact does how the parent copes have on the child, and some helpful approaches for coping and adjustment for parents?

Stephanie  12:52

Kids are so intuitive. They know if mum or dad or their caregiver, they know there's something going on. They know that they're upset or there's something not right. And so I think it's really important to show your child that you also need to fill your tank up. And so it's really important the whole saying of put your own oxygen mask on the airplane before your child do that. And I'm not saying go and get a long massage. I'm saying have some self compassion. This is not normal. The experience that you're going through this is not the everyday, and it's not something that you should just get over straight away because it's rocked your world. It's a traumatic experience. 

So doing things, walking around the block, going out and getting some fresh air, if you're stuck in the hospital, or even stuck in the home, if you can get a moment to do like a 10 minute lap, just to feel the sun on your face, the fresh air being in a hospital, 24/7 is stifling, having little moments like that, doing a mindful activity, such as having a cup of coffee or tea, and just enjoying the warmth on your hands, using your five senses, the warmth on your face. You can smell the aroma of the the tea or coffee, the feeling of it when you take a sip. What can you hear around you while you're doing that? 

So it's really engaging your senses, so you're not stuck up in your head and up in the thoughts and the worries and the what ifs it's just stopping and had taking a breath really. And I guess in saying that stopping and taking deep breathing is not to be underestimated when you're feeling stressed and anxious, doing something called Box Breathing can be really helpful, where you breathe in for four, hold it to four. Breathe out for hold again and repeat and do that a few times just to regroup and take photos of the progress of your child. 

Families often have said it's been really nice to look back of where they were when they were in ICU, for example, and then go, Wow, look how far they have come. And because. When you're stuck in amongst the rehab, it can feel like things are going really slowly. And have a notebook, because things are going to be in and out of your mind. And so write things down as you think of them. And then, if you'll get getting information from professionals, write bits and pieces down. Don't be afraid to say as well, Stop, I just want to write that down for a minute, because they've got a lot of thoughts going on in their head as well. You can absolutely advocate for yourself to say, Hold on a minute. Let me write that down.

Anna-Marie 15:30

So on top of everything else that they're dealing with, families are usually faced with the reactions of other people, extended families, strangers in the street. Any tips about managing other people's reactions and what can be perhaps awkward questions, comments and looks.

Stephanie 1 15:45

It is awkward. It's the unfortunate nature of our society is that we're not as inclusive as we should be. We say silly things because of ignorance often, and don't really think before we speak. And so unfortunately it means my clients, the kids with spinal cord injuries and their families, have had to deal with that. And so I guess, number one, you don't have to answer those questions. I think, don't feel like don't feel obligated to answer the random person on the street who wants to just know your story. You don't actually have to. That's up to you, whether you want to share that or not. 

The other thing is, take things as the hope that people are just curious in terms of maybe the look, wow. They've never seen such a cool wheelchair before. Who knows whether we've had kids who've had amazing wheelchairs with beautiful colors and sparkles and all kinds of things, and so it might be just be a curiosity - Wow, that's a cool wheelchair. The other thing is, sometimes having a little spiel in your back pocket can be useful as well. So you can just pull it out when someone asks, and you can practice that. Yep, I was in a car accident when I was this age, and now I use a wheelchair to get around, or I've gotta use crutches. 

And you can elaborate as much as you want, but again, that's completely up to you as a parent and for the child, if you want to share, we all have bad days, and sometimes, you know what, we don't want to talk to anyone. We just want to get on, get on and do our do whatever we need to do. 

Anna-Marie 17:12

So Steph, it's so hard to capture the depths and complexities of this lifelong journey in a short 10 minutes. Relate other key things that you've seen over these that resonate well with families, so we can build more resilience and adaptability in the face of such adversity.

Stephanie 1 17:32

Yeah, I think, Gosh, kids are really resilient. Families are really resilient. And that's been a real pleasure and a real privilege that I've been able to witness. I think there are so many possibilities that are actually available to kids. It may not feel like it all the time, but I think just knowing that the world is still your child's oyster, it just might look a little bit different, but it might take a little bit longer to reach a particular goal that you might have for your child and what the child might have been hoping for. 

So there's definitely things that that can be done and great, exciting opportunities that are available. It might mean that your child has to be a little bit braver because they've had to experience something that their peers haven't, and they might have to think outside the box a little bit more, and have to deal with things that, yeah, that their peers haven't. So navigating different barriers, like catheters and bowel care. And how can I go on my excursion or go out to the movies with my friends, for example, it can be done. 

It might mean that we've just got to make sure that the catheters are done before you leave, and that you've scoped out the location in advance, the waves of grief will come and go. I think don't expect that everything will be all okay all the time. You'll have good days and bad days, but and the waves will sometimes knock you when you don't really expect it. But I think the other thing is, families can get back up and carry on, even if they have been hit with a big wave of grief. Use your friends, use your family. Use professionals as well. Use your GP and to access social work, psychology, school counsellors, absolutely use the professionals that are available to you. 

Use spiritual groups that you might be attached to reintegrate with them if you've been pulling away, if that's something that's important to you, and do some small things to just put family fun back into life. Is really important. Fill up your tank. Make sure your child is filling up theirs. And it doesn't have to be huge, grand things. It's just little moments of of thankfulness, gratitude, fun and some little laughs And yeah. Also knowing there are things that are immediately available, like lifeline, access, lifeline, if you are having a day where you need them absolutely, you can access that, 24/7. 

Carers New South Wales for parents in, is something that's also easily accessible. You can access counseling for free through them as well. And then there's a program called strength to strength that is also available for caregivers of those with a child with a spinal cord injuries, that is a psycho educational and support group that's available for people. There are lots of things available and lots of lots of hope to be had. 

Anna-Marie 20:24

Steph, thank you so much, and more power to your work. We can't say enough about the helpers in this profession and what they do for children with spinal cord injury. Thank you.

Stephanie  20:34

Thanks so much. Bye.

Anna-Marie 20:40

You just heard Stephanie Tuck there, a talented rehabilitation social worker with extensive experience in both adult and pediatric community settings throughout New South Wales, specialising in neurological conditions, including spinal cord and brain injuries. Steph co facilitates the strength to strength program, which builds family resilience and has developed various initiatives to support families in their adjustment and coping process. 

And now over to Thomas Wiggins. Thomas was awarded the prestigious Disability Trainee of the Year title at the 2019 Apprentice Employment Network NSW and ACT Group Training Awards. He's an accomplished young adult who cherish spending time with his extended family, also a rugby league fanatic and who also loves playing golf.

Thomas 21:35

So I am living with a spinal cord injury. So a bit of background on that. My parents first took me to the doctors to get tested when I was about four or five years old, and then my parents were worried about me falling over my own feet all the time and losing my balance quite a lot, and it was getting to the stage where I was a bit concerning. So then they took me to the doctors to go get some tests done, and they came back with a couple of recommendations. 

So the first recommendation was, I guess you could call it an option. So the first option was to do nothing and just see where it goes. But the doctors mentioned that there's a possibility that Thomas will become a quadriplegic by the time he's 21 years old. So they didn't really feel very comfortable going with that option. And the second option was going down the medical treatment route. So then that led to a series of operations from about five years old to about 10 so through that, I was in and out of a wheelchair post operation for a little bit, because I wasn't strong enough to get around on my own, so I had to learn how to walk three times, including from when I was a toddler. 

Anna-Marie 22:56

And so experiencing all those hospital admissions, medical appointments, it could take over your life as a kid, really. Do you remember anything about those times and how you cope with them? 

Thomas  23:09

By coping with them? I had a really good support system, my family and friends and my schooling Disability Support unit as well. So the way that I dealt with it was, I didn't really have a choice but not to cope with it. Yes, but back to your first question. I'm a massive footy rugby league fanatic. Unfortunately, I'm a West Tiger supporter. We haven't been going very well for the last few years. Very family orientated. I spend 90% of my time with my siblings, two nieces as well. And yeah, I love playing golf. 

Anna-Marie 23:47

You won the prestigious Disability Trainee of the Year title with the Apprentice Amployment network NSW and ACT Group Training Awards. Yeah?

Thomas  23:59

So on that note, yeah, I first started my it traineeship in 2018 which I did for two years. So I finished that in 2019 so I worked full time at a high school providing IT support for students, teachers and for support staff. So out of that traineeship, I was successful in completing my certificate three and four in information technology. So that was pretty good. And then in 2019 that's when I was nominated for the award. And then I was lucky enough to win it, which was pretty cool. 

Anna-Marie

Did you know you're gonna win it? 

Thomas

Oh, I had a feeling, I've worked pretty hard to get to where I was.

Anna-Marie 24:41

Okay. So just remembering a little bit about that, and then how you cope with your challenges? Would you like to share that with us, just for those that are trying to meet their challenges currently?

Thomas 24:53

Yeah, of course, yeah. So with the challenges, you just need to be patient so things are going. To get really hard. You're going to get frustrated, you're going to get upset, just be patient, like you're going to struggle with little tasks, like, from when I was a kid going through this stuff, I struggled opening a jar of peanut butter or jam or something like that. So because I couldn't open it, I got really frustrated, and then I started getting really upset. So I was lucky enough that my parents were very supportive, and they pushed me to help me get stronger so I can do day to day tasks. But yeah, so it just goes back to having a really good support system. Thomas,

Anna-Marie 25:36

What advice would you give to someone who, perhaps they've been away from school a lot, or they're coming to understand the impact of their injury or their spinal cord changes in finding friends?

Thomas 25:50

So being in out of school, it's difficult, very difficult. So like stepping away for half a day to go to appointments, being out of school for long periods of time due to surgery and recovery, it's definitely a challenge, but to try and get yourself back in to the routine of being in class and mingling with other kids, it's definitely a challenge. 

Anna-Marie Reyes 26:17

And did you feel like you needed to fit in at all?

Thomas 26:21

Although I tried to overdo it a little bit and fit in with the I guess you could call them the cooler kids of my year. So I would do things that weren't necessarily I wasn't being myself. So I wouldn't recommend doing that, if you can help it, but it's just an experience so that I went through to make me who I am today. 

Anna-Marie 26:44

And like other young people, by virtue of the fact that they're going through this at school, may find that it's really difficult to deal with certain group of people, and they may end up with the sort of people that they didn't really want to end up with... any tips about that, and how you can deal with it? 

Thomas 26:58

Don't give into temptation. Do what you think is right and what you are comfortable with, and surround yourself with people that will appreciate you and accept who you are. 

Anna-Marie 27:09

And so researching kids with disability has shown that the attitudes of those around them affect how comfortable they will be or they are with socialising with peace. So what was it like for you, and not just in school, but also at work? 

Thomas 27:25

So in school, to be completely honest, it was probably harder for them, like my peers, compared to on me. So they would have noticed all the special treatment that I would have got from the teachers, and I got extra time to do exams. I had a scribe to write down the answers for me, and I was able to leave class, like a couple of minutes earlier before recess started. So I missed that chaos of all the kids running to the playground and stuff like that.

Anna-Marie 27:55

And then when you actually go for jobs, for example, and in your workplace, what was it like? What sort of behavior or attitude of those people around you that really helped you get on with life. 

Thomas 28:06

Yeah, so in the workplace, I was lucky enough that I haven't had any issues at all, so you just have to be open and honest. So in the application, say you do have a disability, but these are my limitations. This is what I will need to, like, support wise, to be able to do fulfill my role. So I haven't, yeah, I was really lucky. Like my management, they've been outstanding. They've allowed me to work from home, because they know that fatigue that it puts on me from the travel, so that affects my day to day role a bit.

Anna-Marie 28:39

I'm also quite curious to find out, too... how is it like, and how do you navigate or manage when people can't see your disability?

Thomas 28:47

Oh, it's a really good question for me, like by looking at me like you wouldn't be able to see that I have a disability. But there's certain mannerisms, like the way that I walk, the way that I hold myself, and stuff like that. You could slightly tell that something's up, but yeah, like, it hasn't been a major issue for me.

Anna-Marie 29:08

And what's the thing that could really hurt people with hidden disability, in terms of the behavior of those people that are able bodied, people like, for example, me, if I came up and asked you questions about it?

Thomas 29:21

I've always been open and honest about my disabilities. Like there was a stage where I wasn't comfortable talking about it, and I just walk away and just leave the conversation and just not do anything about it. But as I grew older, like I love talking about it, I love getting the awareness out there. It's not easy, but yeah, it will just take time for you to get comfortable.

Anna-Marie 29:44

Do you have any tips for young person that's scared they don't quite know to make that crossover, like feeling confident enough not to feel bad about it? What can you share with them so that might help them cope with it? 

Thomas 29:57

Yeah, just be patient. Honestly. Yeah. If you're not comfortable around the people that you're wanting to sell your story to, then they're probably not the best people to tell it to, so they probably won't understand what's going on. But yeah, just patience, like you'll build up the confidence over time so it won't come naturally. So you do need to test yourself a little bit like you could even practice telling your story to your siblings, your parents, your aunties, your uncles, your grandparents. I think that's probably my best advice.

Anna-Marie 30:28

Is there anything else you want to add?

Thomas 30:30

Oh, yeah, look so with the challenges, the impact on your siblings and your parents, I couldn't imagine what it's like seeing it from that side. In my case, my siblings and parents, I missed out on a whole lot of stuff during that intense time of going through my surgeries, the doctor's appointments and all that sort of stuff. Like my siblings, I would have missed out on being able to go down to go see my family down the south coast, because I was bed-bound for quite a fair bit of time during that time. So just for the parents, just be mindful. I know it sucks seeing your kid go through stuff like that, but if you do have siblings, just keep in touch with them, all that sort of stuff.

Anna-Marie 31:17

Thank you so much for your time, Thomas.

Thomas 31:20

Oh, awesome. Have a good day.

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Anna-Marie 31:24

And you just heard the voice of Thomas Wiggins there, and ending that interview. 

In this week's episode, you heard from guest Stephanie Tuck... Steph is a talented rehabilitation social worker with extensive experience in both adult and pediatric community settings throughout New South Wales, specialising in neurological conditions, including spinal cord and brain injuries. She possesses a deep understanding of the far reaching effects that injury, illness and disability can have on families and communities, passionate about both group and individual therapy. Steph co-facilitates the Strength to Strength program, which builds family resilience and has developed various initiatives to support families in their adjustment and coping process. 

Also guest Thomas Wiggins. Thomas is an accomplished young adult who cherish spending time with extended family. He's a rugby league fanatic who also loves playing golf. In recognition of his hard work and dedication in the workforce, Thomas was awarded the prestigious Disability Trainee of the Year title at the 2019 Apprentice Employment Network NSW and ACT Group Training awards. You can find out more about their expertise in the show description online. 

And that ends this week's episode, you've been listening to Spine Care 40 voices for 40 years, produced by radio 2SER-FM. 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 executive producer Anna Marie Reyes, see you in the next podcast. 

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