The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies.
In this episode of SCN2A Insights we are joined by Heather Renton of SWAN and Sue Lenzi, Mental Health Social Worker to discuss how to help children manage through the pandemic.
Heather Renton is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother two children, one of whom has a rare genetic condition. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.
Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. Heather is one of the co-authors on the report “An Ounce of Prevention”, which captured the value of early community engagement and co-design of projects.
Sue Lenzi is a Mental Health Social Worker with nearly 40 years experience, over 10 of those in private practice. Sue started in Child Protection and the Justice Department and then spent 20 years with Anglicare working with homeless youth.
Sue is based in East Kew, Victoria where she provides counselling for a variety of clients, children and adults who are experiencing difficulties in their lives. For over 10 years, Sue has passionately facilitated a playgroup which caters for families who care for children with disabilities and chronic health conditions.
Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.
Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.
Dr. David Cunnington: Welcome to this episode of SCN2A Insights. And hi, Kris.
Ms. Kris Pierce: Hi, thanks.
Dr. David Cunnington: This is another episode but you’ve really taken the lead. What were you trying to do with this episode
Ms. Kris Pierce: So this episode follows on from our last one where we focused on parents and the challenges they’re facing. This one is about supporting parents with their children at home, who are now home 24/7 due to being in isolation, and just the challenges around that and what resources and support we can find for them.
And today, we’ve got Heather Renton, who’s the CEO of Swan with us, which is Syndromes Without a Name, who also represents this same kind of group with vulnerable children.
Heather Renton: Hi, Kris. Thanks for having me on the show. In this podcast, we’re going to talk about children. How do you support children in uncertain times, we’re joined by Sue Lenzi. Sue Lenzi is a mental health social worker with nearly 40 years of experience, over 10 of those in private practice.
Ms. Kris Pierce: Welcome, Sue. So in the last podcast, we’re talking about supporting parents. And in this one, we’re going to talk about how we can help our children get through these challenging times and unprecedented at times. So how do we manage to keep our children happy and optimistic during this pandemic when all of the news, as we discussed, is a bit doom and gloom? How do we keep them upbeat and focus on the good thing?
Sue Lenzi: I know it’s difficult, but modeling calm and optimistic behavior will go a long way to keeping your children grounded. They take their tone from you. My granddaughter the other day asked why she couldn’t go to the park on the weekend. And I had to say the equipment germs on it and could make her sick. I was about to continue with a more in-depth explanation until she said, “OK,” and started playing with something else. What did I learn? Don’t overshare. Children can’t process things outside their experience but will respond to simple and clear messages. And also ones that are delivered with confidence so that they feel safe. And our job is to help them to feel like that.
I guess the power of play and distraction never goes away. Keep having fun and encouraging them to have fun, like washing your hands and singing Happy Birthday, one effective message that’s been. I see kids doing it all the time now, kids who used to be dragged to the sink are just going, “Oh yeah, this is what we’re doing now.” Again, don’t overshare, age-appropriate discussions will be led by your children. They’ll ask what they want to know. It’s been like sex education, you give too much detail too early, and they go yuck and walk away. Whereas if you just sit there and answer the question they ask, they’re fine.
Don’t have the news all day is the other thing. It leads to overload. Life is continuing despite this pandemic, and we’ve got to remember that kids, in particular, just want to get on and enjoy themselves. So we do have to monitor what’s going on in the background.
Heather Renton: How would we manage children’s isolation? They can’t go to the park anymore and meet people, what do we do to keep them connected and engaged with their peers?
Sue Lenzi: I know that in terms of social media, our kids are in a better position than any other generation to stay connected. They’re comfortable using media in a way that I’m not, and they’re constantly teaching me things. I’m running a virtual playgroup for my time group at the moment. And I’ve been watching kids as young as two holding up artwork and toys to show their friends. And so it can be done. All the kids use Snapchat and Facebook.
I guess one of the things, though, is that a lot of SWAN families have kids that aren’t up to all of that. Part of what we have to do is to be their windows. So, I imagine that some of the teachers at their special school and special development school will be working on this stuff at the moment. It may be that as a parent that you set something up and try and engage them in it. And as you said, your kid might only have a 10-minute engagement in that session, but it still keeps them a little bit connected.
I also think having photos up around the room and referring to them and saying, “Oh, that’s Will, what’s he doing today do think?” The other thing though, is that the people that they live with are going to be the people that stop them from being too isolated. And that is the unfortunate reality. Other kids can look outside, I’ve had lots of kids contacting me for counseling, because they know they’re not going back to school. But I also know that they’re chatting with friends. With some of your kids, they won’t be able to do that. It’s going to be up to you as parents and family to try and combat that.
Ms. Kris Pierce: My mom is in a nursing home and we’re not allowed to visit at all. Her nursing home has gone above and beyond, so our kids, all the grandchildren are writing emails, or even just sending photos. So there is a level at which many of our kids could kind of be involved in something like that. Even it’s just choosing the photo they want to send to their grandma in some way. What are some of the signs that we might see in our children if they’re not coping?
Sue Lenzi: I think you look for any changes in behavior like meltdowns, needing constant reassurance and clinginess, withdrawal, just angry out of character behavior, all of those things can indicate that they’re not coping, or just that they’re having a bad day so don’t overthink it. Give your children time to express their feelings without being shut down. Don’t lie to them. But talk to them about what they can do to stay well, you know, cover your mouth when you cough and cough into your elbow and wash your hands.
But also let them know that they’re safe and that you’re in charge because that’s what they really need to hear a lot of. Even our teenagers, it’s the same thing like, yeah, they can’t sit year 12 exams, but we’ll get them through year 12 and it won’t disadvantage them. It’s a message they need to hear. For kids with disability, it’s also about relying on parents to both recognize when they’re not coping, but also work out strategies to help take them out of their headspace so that they can cope.
Ms. Kris Pierce: If we’re recognizing some of these fears and concerns, how do we talk to them about them? I think you sort of touched on this, but maybe you could just expand on that a bit.
Sue Lenzi: I often find that children don’t want to worry their parents, they get quite protective. And so they won’t always open up to their parents. And I think it’s really important if there’s another trusted adult or an older teenager that they can talk to, and you can enlist them to help if you trust that they’re not going to say silly things. I think it’s important to remember we’re raising our kids in a village not in isolation and other people, you know, neighbors or whatever, calling over the fence and just checking up on them, maybe a teacher, if they’re doing any sort of schoolwork, can be helpful.
It’s also about you talking to them and saying to them that you’ve noticed that they’re looking a bit worried and obviously that the pandemic is an issue and asking if they’d like to talk to you or to somebody else. There are lots of good counselors around. And there are counselors who have experience with disability. They can help kids to express how they’re feeling, whether it’s through art or orally.
And you can also talk to your GP and say about getting a referral again, to somebody who’s good at working with kids. I think it’s really good that we don’t ignore kids concerns because they’re as anxious as we can be. But often we just say “Oh, don’t worry about it, don’t worry about it, you’ll be fine.” We need to let them talk about it.
Heather Renton: Is it best for our children to have a routine or allow them a little bit more flexibility in this uncertain ever-changing world?
Sue Lenzi: It’s important to remember that you’re not teachers, and routine is important but so is flexibility. You’re not sort of held by having to get through a curriculum. I come from a family of teachers and I often remember dinner table conversations about the class that went wrong, they just couldn’t capture the interest of the kids, and so they had to throw out their plans and do something totally different. If that’s what the professionals do, it’s what we need to do as well.
We need to you know, recognize that sometimes weather up settles our kids, you can’t get cooperation, no matter what’s on offer. So have your routines, have your plans, but always be prepared to reassess. I’d also say in terms of preparation, you have your general plan, but you also have snacks, you have a good study space, and you’ve got a TV or something as a backup plan if nothing else works.
Heather Renton: How many hours should parents aim to do each day? How do we refocus our children when they’re totally not interested or not engaged?
Sue Lenzi: Many of the kids that I’m working with including some in disability, they’re going to be returning to online lessons next week and I think that’s going to be incredibly challenging. I know schools are trying to gear up for it, but I don’t know how they’re going to go. Homeschooling is really challenging. And I speak as someone who had to do it for 12 months when my daughter was unwell.
Part of it is establishing routines, so your child knows what’s expected of them at any particular time. And a timetable that you print and laminate and stick up in the room that you’re going to be working in is useful. Working one-on-one, you can cover work much quicker. So it’s about recognizing when you’re pushing too hard.
In a classroom, there’s lots of downtimes, you know, there’s the kid who’s being naughty in the corner, there’s the teacher not paying attention to you or writing something up, and so you’re just sitting there chatting to your friend next door. So it’s not all hard work in a classroom.
Often when you’re sitting with your child one-on-one for an hour, you’ve covered what they might have done in four hours of classroom teaching. So I actually found that four hours spread across the day was more than enough unless they just got so engrossed in something they wanted to keep going. But more than that, it was just mental exhaustion for all of us.
It’s also about being flexible. If they’re not listening, they’re misbehaving, you’re not going to get anywhere, you’re not going to win that argument because you’re a parent, you don’t have the authority that the teaching staff have. So you got to be more creative. Use media tools. Look up YouTube clips to demonstrate what you’re trying to explain or you use all the things at home. If you’re a good cook, get your child to measure out ingredients, that’s a maths lesson in itself. But also standing and watching something cook is a lesson in patience.
Trust your instincts and don’t set up a battlefield over teaching your kids because you won’t win. It’s difficult enough for the kids to deal with the fact that they’re not going to see their friends, they’re not going to have lunchtime and sport and all those things, so much as we’re struggling, they’re going to be struggling too.
Heather Renton: I know parents who are working full-time are really quite stressed about how it’s going to go. So you know, I think the point you raised about covering a lot more one-to-one than you would in the classroom is something for us to remember. So thank you. And you know, thinking outside the box, trying to teach the child to make the bed or YouTube clip to do that so it doesn’t necessarily have to be you there. Get them to watch some different YouTube clips, and then try and if it works, it works. If it doesn’t, it doesn’t. There are other chores to do. I think you’re right, we have to be a bit flexible and not be hard on ourselves because some days it just won’t work.
Ms. Kris Pierce: Yeah. And we can’t be the parent, the teacher, and also a full-time worker, you can’t – you just can’t do all those things at once. And that’s really what – that’s what’s being expected of us, but that’s perhaps what we’re playing, you know those expectations on ourselves. So taking it easy on ourselves will also help our children. So what other ways can we entertain our children, Sue? We’ve got school, schoolwork, what are some of the other things we can be doing?
Sue Lenzi: The first thing is that use your devices wisely and maybe relax the rules a little so that they become something that’s a bit of a reward, but also incorporated into their day. Not being able to do the normal things means that they’re suffering boredom and probably going stir crazy. And I’m sure that you’re going to be experiencing the same thing because you can’t get away from the house. But at least we understand the lockdown. They don’t. They just know that we’ve changed the rules on them.
I think while the weather is OK, make the most of it, try to get outside, set up tents, cubby houses, play with water, paint all the messy stuff that you can, textural things, they’ll get a kick out of that and they’ll be making mess outside so it’s easy to clean up. If it’s raining, use TV to get through, but try to make it special. You know, we used to maybe set up a movie and we’d make popcorn together and maybe dress up as the characters in a show, so that you’re doing a bit of interactive stuff as well.
But you don’t have to be a super parent, there are going to be times when you lose it because you’re human. That’s when you use the devices. Just plump him down and say, “OK, mum’s just going to have a bit of timeout.”
There are lots of things also popping up on the internet in response to the lockdown. I’ve noticed. For instance, I got told today that the National Gallery has put up some free art classes for adults. I’m sure that there are things for kids to do. The museum usually has interactive stuff, so spend a bit of time checking out what’s there as well and share it with your friends and see what they have found. Because that can also help you to get through.
Ms. Kris Pierce: How do we support our children to understand, you mentioned then so that, you know, we understand the lockdown, but our children perhaps don’t. And that’s even going to be more exemplified with children with disabilities whose capacity might not be there to understand really on any level. And they just want to go out and watch trains or go to the park. How do we try and explain to them what’s going on and why their world has been turned upside down?
Sue Lenzi: It’s all about pitching it to their level of understanding. As I mentioned, my two-year-old granddaughter when I was talking to her about why there is no playgroup. That’s a practical discussion. It’s not about there’s a pandemic and so we’re worried about you. It’s just, “Oh, playgroup is canceled. So we’ll talk to your friends on YouTube or whatever it is, but we won’t be able to actually touch them and see them.”
Work out how much detail you now need to give, how much understanding your particular child has. Some children are really distressed that they can’t go to school. Schools are safe and fun places and they want to be there. They don’t understand why they’re not allowed to go there. Sometimes just saying that schools are closed or on holidays may be all that you can say. You can’t go into more detail than there. Kids understand about holidays. They don’t understand why they’re going so long. But they do understand that holidays happen.
And then it’s about talking to them about what else we can do. Doing things a bit differently for a little while. And talking about one day when they go back to school I think is important. You’ve got to remind them that this isn’t forever, that it will change and they’ll be back in the school system and back seeing their friends, just not yet.
Ms. Kris Pierce: Well, thank you, Sue, for joining us for this podcast. It has been really helpful and hopefully helpful to many of our parents out there who are looking for some answers, but also just some support and reassurance that they’re doing the best they can.
Sue Lenzi: Thanks for inviting me.
Ms. Kris Pierce: Heather, what were your takeaways from that podcast with Sue where we’re talking about supporting children in uncertain times?
Heather Renton: Look, I think the important thing is to break it down to their level, like don’t give them too much information, just what they can process. They’ll ask for information, so you don’t have to overshare everything with them. And I think, you know, trying to look after them, particularly if you’ve got a home school as well, do the visual schedules, break the task down, you’re going to have good days and bad days. Remember, we’re not all teachers, we can only do the best we can. If we focus on different skills like cooking or making the bed, our kids are still learning.
So I think if we can just provide a supportive environment for them, let them know we’re there for them. Hopefully, we can all get through this situation in a positive way and our kids won’t be impacted long-term.
Ms. Kris Pierce: And I really liked how she said that, you know, one hour at home or one hour of condensed time with you might be four hours at school. And so you know, you’re not going to need to be doing as much and to sort of taking that pressure off for the view that you need to be doing six hours a day as structured as they would at school because it’s not necessarily how it works at school.
Thanks for joining us, Heather. And we will put all the links to SWAN and all the resources. I know, you’ve got a great resource page that you set up, which has been fantastic for our family, but also others. And we look forward to having you again soon.
Heather Renton: Thanks for, Kris.
Dr. David Cunnington: Another great episode, Kris, and really helpful tips in that interview. Thanks a lot for organizing that.
Ms. Kris Pierce: Yeah, check out the show notes for all the resources that we talked about and also other things as they come up.
Dr. David Cunnington: If you liked the podcast, subscribe via any podcast app and leave us a review. And you can follow SCN2A Australia on social media at SCN2A Australia. Thanks a lot.
Ms. Kris Pierce: Thank you.
This podcast is not intended as a substitute for your own independent health professionals advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.