Rites of passage

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Anna-Marie (0:16 - 0:46)

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.

Anthea (0:48 - 1:31)

I guess we had to take a bit of a step back to understand that sometimes things would not work out perfectly. There are occasions when he was home where he would attend, for example, a campfire, and we wouldn't be there with him to watch and check. So we did have a couple of occasions where he had a bit of a burn on his skin, not realising he was sat too close to the campfire. They're hard lessons to learn. He's learnt that now and knows what to do, and we keep a little first aid kit in the car so that if anything does happen, we can do some immediate first aid. But also, I guess he needs to go and explore and experiment and work on how to get around different places, different people, different scenery.

Anna-Marie (1:36 - 2:45)

The title of this podcast episode is Rites of Passage, and you just heard the voice of Anthea McClintock there. Anthea is a devoted mother of four young adults, balancing her parental duties with her professional life as a senior executive. For Anthea and her family, life changed abruptly when on a Saturday afternoon in spring, her 15-year-old son had a mountain bike accident. Anthea shares invaluable insights on balancing a healthy parent-child relationship while fostering independence, and highlights the sensitivities required to empower young people with knowledge about their health care. 

Before that though, you'll hear from Cathi Duggar.Cathi is a highly experienced physical therapist and brings nearly two decades of expertise from her work with a specialist adolescent spinal cord team. Cathi highlights the vital roles of healthy competition and peer camaraderie in recovery, and emphasises the importance of maintaining connections to education and social lives so that teens can navigate critical milestones.

Cathi (2:48 - 3:15)

I have been working at the Shepard Spinal Center for 25 years, and 18 of those years have been on the adolescent spinal cord team, so many years there. Then I've also worked in seating clinic, and then in management for the therapy unit. Many of my most of my years here at Shepard has been with adolescents.

Anna-Marie (3:15 - 3:33)

So we all agree the teenage years are quite special, challenging, but exciting for young people. They're growing in independence, they're establishing their identity in the world beyond the family, and many other firsts that they experience. What do you notice about this group that's unique when you see them in your unit?

Cathi (3:33 - 4:10)

They're still the same. They still are trying to find their identity, even though they've been in an accident or hurt at any point. But with the accident, it's like they're being pulled back to having their mom and dad take care of them, or somebody in the family. So just as they're trying to flee the nest, they tend to be pulled back. But during the transition and through therapy, we're showing them that they can leave the nest again, and how to find that just in a different way.

Anna-Marie (4:11 - 4:20)

You mentioned something about finding the things that mean the most to them, and that it's a good place to start. Can you share a little bit how that can happen for us?

Cathi (4:21 - 4:50)

Absolutely. Now, especially with social media, all teenagers are attached to their phones nowadays. That is a good way for them to communicate. Making sure somebody who may not have the use of their fingers, to be able to give them that freedom again, to use their phone, is such a big deal for them to get that kind of freedom back. Even though it's just a phone, it means a lot to them.

Anna-Marie (4:50 - 4:57)

What role would their peers or perhaps mates that they strike up with once they're in your unit, does that play a role at all?

Cathi (4:58 - 6:01)

Oh, it's a huge role. Teenagers tend to be competitive, especially male teenagers. And that's a good way for us as therapists to get them to buy into some of our therapy, is to make it a competition. And they really have a good time doing that. They don't even know it's therapy. They just think they're having a competition. But also, they really lean on each other when they're going through the same thing. So they really lean on each other, their support for each other. 

And many of those relationships actually go with them once they leave. They tend to keep in touch, just because in their town or city, they may be the only person in a wheelchair that is around. So for them to be able to call somebody that they know went through it with them, is very nice for them to have a good support system.

Anna-Marie (6:02 - 6:12)

What do you think they need to achieve to get back on track to typical teenage life, in terms of what we can provide so they can be everything they want to be while being safe and healthy?

Cathi (6:13 - 6:57)

Support, I think is the biggest thing that they need. They need someone to say, you can do this. Let's do it together and push them to be the best that they can be. I think we find that somebody who has a big family support system, but a family support system that still pushes them to be the person they are. Not a family that coddles them. They tend not to get out into the world as much because they're not glass. And that's what we try to even teach the families is let them be who they can be, but support them and let them still get out there.

Anna-Marie (6:58 - 7:15)

I find it quite interesting when you say meeting them where they are. Sometimes it must be difficult to meet where they are. What do you think are the cues that can be an indicator that it's time for that stage that you could meet them where they are?

Cathi (7:15 - 8:31)

Finding out about who, what their personality is a big, like through therapy, you get to know them pretty well. And as you build that relationship, you find out what their likes, their dislike, what their dreams are, what they've always wanted to be. And so you build on that and that's where you can find out where, where are they, where, where's their mindset. And even through therapy, you know where they are. Is it somebody you have to push all the time or is it somebody, Hey, do these exercises and they're right on it, but you got to give them time. It's time. They get frustrated. They can't do something, find something they can do. And then from there, then let's get to the next step.

Where is that next step? So it's a back and forth of pushing them hard, but coming back and showing them, look, this is what you've already accomplished. Let's accomplish the next step. And teenagers get frustrated anyway, whether they're hurt or not, they're frustrated. That's just the nature of teenagers. It's really finding that balance.

Anna-Marie (8:31 - 8:43)

The centre where you work runs specialised programs and it's designed for adolescents. Talk us through a couple of them, please, and why this approach is so important for getting good outcomes for the young people.

Cathi (8:44 - 10:14)

So we have a lot of different things that we do. We have a school in the hospital, so they are not falling behind in their schoolwork. So when they do go home, they're still with their peers as far as their schoolwork is concerned. We do what we call fun Fridays. So when we go out, we may go out in the city, we may stay and do a group together. Again, more of that bonding, group bonding.

We also have a return to school program that one of the therapists actually goes to the school to educate them about spinal cord injury. So that when the teenager goes back to school, that they don't feel like they're under a microscope. It's to educate people, whether it's just the teachers or sometimes we educate the whole entire school, all the students, again, so that they're not frustrated about hearing, because teenagers will make, when they don't know something, they'll make something up.

So now they'll feel comfortable knowing that, okay, they know the real story of why I'm in a chair, not something that has been made up. We also do special things for Halloween and Christmas. And so we do some even extra special things around the holidays for the kids.

Anna-Marie (10:15 - 10:20)

Can you tell us a little bit and share why do you think that's really important, those programs that you focus on?

Cathi (10:21 - 10:45)

Because it focuses really on the special milestones that the teenagers are trying to meet naturally, whether they're in a chair or not. These are things that naturally happen. We just want to keep fostering that normalcy versus whether you're standing or you're sitting. We want that normalcy to continue. It just may be in a different way.

Anna-Marie (10:46 - 10:57)

What factors do you think contribute to a better outcome for young people? And what do you notice about that journey? What's different for those that do and don't do so well?

Cathi (10:58 - 11:38)

I think the bonds that they make here, not only with us, but with the other adolescents that are here, I think really help push them to better outcomes because they're doing it together. Again, the family makes a big part of that too. The family that's going to push them to practice what we're doing in therapy, those are the kids that are going to get better at things and will try to go to the next level of independence.

Anna-Marie (11:38 - 11:43)

And how important do you think is the timing in terms of the support they receive?

Cathi (11:44 - 12:05)

Very important, because we have to get them up and mobilising as soon as possible. They may have been in the acute care hospital for months before they get to us, maybe just weeks. It could be just days. You're here to work. And so that's important to get them up and going.

Anna-Marie (12:06 - 12:12)

So Cathy, any other helpful strategies or parting words that you'd like to share?

Cathi (12:13 - 13:12)

I think the biggest thing to always realise is that these kids that may be hurt with a spinal cord injury, they're no different than the ones that are standing up and didn't have a spinal cord injury. I think that's so important to know that they're just moving in a different way. And I think that's so important for everybody to know that is that they don't want to be different. No teenager wants to be different. They all want to be the same, right? I think that's all over the world.

So now they are sitting in wheelchairs to push the part of who you are inside is no different. Before the accident and after the accident, you are who you are. And let's continue to be who you are and take the world on.

Anna-Marie (13:15 - 14:12)

And you just heard the voice of Cathi Duggar there, who is a highly experienced physical therapist and therapy manager with 25 years of experience at the US-based Shepard Spinal Center, including 18 years on the specialised adolescent spinal cord team with a strong focus on development of holistic care models. 

And now over to Anthea McClintock. Anthea is a parent who has raised four adolescents, including twins, one of whom suffered a spinal cord injury in a mountain biking accident at age 15. Her son's injury was a C4 complete spinal cord injury. At the time, the world stopped and it was hard to understand how we could ever smile again, Anthea then said. Her son is now studying at a university in Sydney, 3.5 hours from home and is living on campus. Life is good, just different and requiring a few more logistics at times.

Anthea (14:13 - 14:41)

Under the circumstances, we've been very grateful for the services that we've received across both the adult and the paediatric services. They were both very different experiences. Had his accident when he was 15. So an older adolescent, but not quite ready for the adult system. We learned different things across both systems. And I guess that's been an important part of our transitional journey is as we've worked out how to live with this, with a family member with this condition.

Anna-Marie (14:42 - 15:01)

So as parents, we see our children growing in independence. We promote their confidence on the path to being fulfilled. Healthy adults, we respect their privacy while keeping them safe. How did the spinal cord injury initially affect your parenting relationship and then your journey in restoring that relationship?

Anthea (15:02 - 16:48)

It was profound change and a difficult process to work out the best approach and also our other children. I guess we had the experience of going from having a very active, very independent young man in the prime of his adolescence to suddenly one not being able to move from the shoulders down. And that gradual realisation that that condition wasn't going to change and all of our lives were going to change as a result. It was very tricky to begin with because it was a difficult thing for our son to accept and to realise the change affecting every part of his life. And then we had to navigate our role in that with him. 

In the children's setting, often parents take on that role of carers for a young man of 15 who was just at that point of experimenting with his own independence and life and building those life skills to go backward didn't seem like the right thing for us or for him to do. We needed to be very aware of how he could live safely with his injury and understand what needed to be done in order to have good and safe care to keep him well and healthy. It wasn't a role that we stepped into because Harrison didn't want us to go back to being his carers in that way. He wanted a normal adolescent parent relationship where he could have privacy, dignity and independence.

We're always there as a stopgap and a support, but it was really important to respect that independence and to give him the independence to learn how to live with his injury and manage his own care team without being reliant on us.

Anna-Marie (16:48 - 17:03)

In the early days, when your son was learning about confronting information, his daily routines, how his body was responding, what did he need and then what did you need to ease that process?

Anthea (17:03 - 18:48)

It was difficult because I guess for the first few weeks we realised that there were going to be changes but didn't know what that looked like and would involve. I think when those discussions about changes in daily routine from showering, dressing to managing his bowel and bladder, they were conversations that really needed to be had in a respectful environment and an understanding environment. Sometimes that didn't always occur that way and I guess as a young man having that conversation with six people present in the room, six medical people present in the room is very confronting.

I think what he needed at that time was just to have one doctor sit and have a very sensitive and compassionate and considerate conversation with him about those changes in his life, not to have a broader audience there, so that he could come to terms with that and not have the presence of a lot of people there hearing that and watching his reaction to it. I guess I think that would have been a really helpful pathway for those initial stages understanding the change. For my husband and I, information to read and digest so that we could form questions and then having those conversations was helpful for us so that we had a bit of an understanding about options and choices and then could go into meetings with medical specialists with a list of questions that we could explore with them to better understand that decision making.

Ultimately decisions were made, he was old enough and there was nothing wrong with his mind. He needed to really understand the pros and cons of different choices so that he felt informed to make a decision.

Anna-Marie (18:48 - 18:57)

You also mentioned something about hearing or sharing with the lived experience of others further down the track. What was that like for your son?

Anthea (18:58 - 20:15)

The initial stages he was in a children's hospital for about five months and then we moved back home which was away from Sydney and away from supports. I guess for that period there wasn't a lot of interaction with others who had spinal cord injury. We were very fortunate to have a peer support worker from SCIA, Spinal Cord Injury Australia, come to see Harrison and visit him in hospital. Just having the opportunity to speak with someone who had that lived experience was really important for Harrison. He wasn't meeting people who were going on a similar journey with him at that time and I think that made it a challenging environment. 

We were fortunate he had the opportunity to move and have a three month period at rehab and that gave him the opportunity to live and spend time with people going through a similar journey and I think that experience was very helpful for him understanding how to live well with his injury, to understand that people cope with things in different ways and for him to work out how he was going to manage these things. I think he also appreciated being able to provide support at times to others, not just receiving support but also being able to provide that to other people who were in the spinal ward at the time with him.

Anna-Marie (20:16 - 20:31)

In those early stages after injury, Anthea, what structures and activities that really helped your son to continue his journey as a teenager, despite the intensity of learning to manage the drastic changes that come with a spinal cord injury?

Anthea (20:32 - 22:26)

Look, the very first thing that made a huge difference, someone told us about a computer mouse that he could manage with his mouth. That was when we were about two weeks in intensive care still on a ventilator and couldn't speak or breathe or eat. The [?quad joy] enabled him to operate his computer. So after two weeks of staying at the ceiling, he had something that could keep his mind engaged. He could email and correspond with his friends at school. He could turn his music on and off. He could watch a movie if he wanted to and I think that was a really critical piece of technology in those early weeks. 

You know, being able to to get outside and have a view out of a window and feel sunshine, they were important things as well when he was getting back to feeling a bit better. The rehab side was really important, just being able to get out and get moving and see what he could do with his arms and using the FBS bike. They were times that he absolutely enjoyed because he wasn't just lying in bed. A really critical thing though was working with the school so that he could actually participate in this sentence. And we were fortunate enough both at the Children's Hospital and at Ride for the teams there to be very considerate to to organise some of his rehab schedule and appointments around, particularly his maths and his English classes.

He was in year 10 at the time and he just wanted to keep things going so that he could complete year 11 and 12 with his brother and his peers. But it also gave him a purpose and a direction and it filled his days with something that he could put his mind to. Having that connection back to the school environment and having to do assignments like everybody else and learn how to do them with a different level of mobility was really important, but particularly that engagement back with his peers.

Anna-Marie (22:27 - 22:52)

There were some years down the road from those initial days and your son has experienced lots of adolescent rites of passage since his injury, completing his HSC with ducks of the school, year 12 formals, going away for schoolies, moving out, doing uni and then night start in the city. What was your role throughout those times and what did your son need to work out for himself?

Anthea (22:53 - 25:33)

When anyone has a family member who has a significant injury, you do feel you just want to wrap them in cotton wool and look after them and make sure everything at all times is completely safe. We very quickly realised that we needed to do a bit of, I guess we called it, letting go of things. An intelligent and competent young man and he had to learn how to live with his injury and to start making choices. I guess we had to take a bit of a step back to understand that sometimes things would not work out perfectly. There were occasions when he was home where he would attend, for example, a campfire and we wouldn't be there with him to watch and check. So we did have a couple of occasions where he had a bit of a burn on his skin, not realising he'd sat too close to the campfire.

They're hard lessons to learn. He's learnt that now and knows to keep a little first aid kit in the car so that if anything does happen, we can do some immediate first aid. But also, I guess he needs to go and explore and experiment and work out how to get around different places, different people, different scenery and work out how to do it in a safe way. He never intended to live his whole life with my husband and I under our roof. He had great adventures planned ahead and we're really pleased to say that he's now starting to have those adventures. He currently attends the University of New South Wales, lives down there on campus at college.

He probably does lots of things that we would worry about and so far he's still well and healthy and happy and he's competent in managing his own care team. And I guess as with any other teenager, they work out how to take other risks in life, but do it in a safe way and sensibly. We hope there's not many other families that are in this circumstance, but if they are, we hope some of that helps with their journey.

I guess the biggest thing for us was stepping back and realising that we didn't need to be our son's carer. We could just be loving parents, as we had always been before his accident. And that gave him that rite of passage to learn how to live well and live healthily with a spinal cord injury and to live with his greatest level of independence. He's now got a choice about where he lives in this world. He might live here with us or nearby us, or he might live far away and we know now that he's got the skills and capacity to do that. I think that was the biggest transition for our son from an adolescent incurring a traumatic injury to being a young adult who's now pursuing his tertiary education and living life as independently as he did.

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Anna-Marie (25:42 - 28:05)

You just heard Anthea McClintock there, who is a devoted mother of four young adults, balancing her parental duties with her professional life as a senior executive. For Anthea and her family, life changed abruptly when on a Saturday afternoon in spring, her 15-year-old son had a mountain bike accident. Anthea shares their invaluable insights on balancing a healthy parent-child relationship while fostering independence and highlights the sensitivities required to empower young people with knowledge about their health care.

Anthea and her family would like to thank the wonderful teams of Sydney Children's Hospital, Orange Base Hospital, the Paediatric Spinal Outreach Service and Royal Rehabilitation in Ryde, as well as the community of Orange, their family and friends, including precious friends made in the intensive care unit of the Children's Hospital over many weeks. 

You also heard from guest Cathi Duggar there, who is a highly experienced physical therapist and therapy manager with 25 years of experience at the US-based Shepard Spinal Center, including 18 years on the specialised adolescent spinal cord team. With a strong focus on development of holistic care models, Cathi tailors her approach to resonate with teenagers, helping them achieve the milestones and rites of passage that are essential during this pivotal stage of life. Her extensive expertise ensures that adolescents receive the support they need to thrive both physically and emotionally. 

Go to the episode description online to find out more about the wisdom and practical advice for supporting teens through their formative years from our guests this week. And that ends this week's episode. As always, I'm executive producer Anna-Marie Reyes. See you in the next podcast.

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