Evidence-based pathways to the good things in life
September 28, 2021
If you’ve ever thought that treatments and therapies are the only thing you have time for, then you are not alone. Sometimes as parents we can get stuck in the trenches of our child’s healing and we think that this is the only way to get to the “good things in life.” After speaking with today’s podcast guest, I had a great reminder about not just looking to the future but also ensuring our kids have the good things in life right now. My guest, Genia Stephen, founder and podcast host at The Good Things in Life, discussed how we can change our perspective on thinking about what are the good things in life for our children.
Genia believes that therapies and treatments, while helpful and necessary, tend to focus on what we can change or fix about our child and she teaches on changing that perspective to focus on strategies that help our children build wonderful lives right now. She takes us through a few of those strategies and how to incorporate them into your life. I hope you enjoy this episode with Genia Stephen as much as I did!
- How therapies and treatments are limited and the strategies for our kids to build great lives. (5:26)
- What the medical model of disability is and how Genia sees it in her practice. (13:43)
- Some heartwarming examples of families that have made this perspective change and how it’s impacted their lives. (17:08)
- Different types of “therapies” that are more inclusive to the child rather than just a client. (20:17)
- What is the ultimate goal of parents and children going after the good things in life? (21:50)
- How to have conversations with friends, family and teachers to help you adopt this perspective for your child. (23:00)
- Genia’s free special offer that will help you incorporate the vision we have for our child’s life. (26:21)
Resources and Links
Get Genia’s helpful posts: www.goodthingsinlife.org/posts
Articles Related to Evidence-based pathways to the good things in life
More about Genia Stephen
Genia Stephen helps kids with intellectual disabilities build inclusive lives at home, at school and in the community. She is the founder and host of the Good Things In Life For Kids With Disabilities Podcast and manages a community of parents of children with disabilities.
Having a younger sister and son with disabilities and medical complexities led her to a lifetime of training in the disability field under premier thought leaders and mentors. With more than 20,000 downloads, her podcast now gives other parents access to her world-class disability parenting education, complete with courses and membership. She is a practicing midwife and medical advocate currently completing her MSc. in Evidence-Based Health Care at the University of Oxford.
Featured in Travel Without Limits Magazine and Community Living Ontario, as well as multiple top-rated podcasts, Genia speaks about creating a positive vision for kids with disabilities, getting the good things in life through valued social roles and social capital, and medical safeguarding.
00:01 Tara Hunkin:
This is My Child Will Thrive and I'm your host, Tara Hunkin, Nutritional Therapy Practitioner, Certified GAPs Practitioner, Restorative Wellness Practitioner, and mother. I'm thrilled to share with you the latest information, tips, resources, and tools to help you on the path to recovery for your child with ADHD, autism, sensory processing disorder, or learning disabilities.
My own experiences with my daughter combined with as much training as I can get my hands on research I can dig into and conferences I can attend have helped me to develop systems and tools for parents like you who feel overwhelmed, trying to help their children. So sit back as I share another great topic to help you on your journey. A quick disclaimer, before we get started.
My Child Will Thrive is not a substitute for working with a qualified healthcare practitioner. The information provided on this podcast is not intended to diagnose or treat your child. Please consult your healthcare practitioner before implementing any information or treatments that you have learned about on this podcast. There are many gifted, passionate, and knowledgeable practitioners with hundreds if not thousands of hours of study and clinical experience available to help guide you.
Part of our goal is to give you the knowledge and tools you need to effectively advocate for your child so that you don't blindly implement each new treatment that comes along. No one knows your child better than you. No one knows your child's history like you do or can better judge what is normal or abnormal for your child. The greatest success in recovery comes from the parent being informed and asking the right questions and making the best decisions for their child in coordination with a team of qualified practitioners in different areas of specialty.
Today's podcast is sponsored by the Autism, ADHD and Sensory Processing Disorder Summit. In order to learn more about the summit and to sign up for free, please go to www.mychildwillthrive.com/summit.
2:17 Tara Hunkin:
Hi, I'm Tara Hunkin and welcome back to the My Child Will Thrive podcast. I'm really excited to have with me today, Genia Stephens. She is the founder of the goodthingsinlife.org and the podcast named the same, The Good Things in Life. And she's going to talk to us today about how we can change our perspective on thinking about what are the good things in life for our children.
And in line with how we're helping them thrive, but not just thinking anymore about just treatments and therapies that we can do to do that, but how we are doing that for them each and every day, where they're at right now and our vision for them in the future. Before we dive into that interview, I just want to remind you, if you do enjoy this podcast, I would really appreciate it if you would subscribe and take a couple moments to review on whatever podcast platform that you listened to on. The more people that subscribe and review, the more the podcast will be seen by other parents like ourselves that are looking for ways to help their children thrive and get them the good things in life like Genia is going to teach us how to do today. Without further ado, let's dive into that interview.
3:32 Tara Hunkin:
Hi, everyone. I'm really excited to have Genia Stephen with me today. She is the founder of Good Things in Life for Kids with Disabilities. Genia helps kids with intellectual disabilities build inclusive lives at home, at school and in the community. She has The Good Things in Life for Kids with Disabilities Podcast and manages a community of parents of children with disabilities. Having a young sister and son with disabilities and medical complexities led her to a lifetime of training in a disability field under premier thought leaders and mentors. With more than 20,000 downloads, her podcast now gives other parents access to her world-class disability parenting education complete with courses and membership. She's a practicing midwife and a medical advocate currently completing her master of science in evidence-based health care at the University of Oxford. She's featured in Travel Without Limits magazine, Community Living Ontario as well as multiple top rated podcasts.
Genia speaks about creating positive vision for kids with disabilities, getting the good things in life through valued social roles, social capital, and medical safeguarding. And this is why I am so grateful for you spending some time with us today because this is something we don't always touch on on the podcast here. And it's so incredibly important because in the end, My Child Will Thrive is all about finding a path for each of our kids to thrive wherever they're at at this point in time in their lives. So welcome, Genia.
5:06 Genia Stephen:
Thank You very much, Tara. I'm thrilled to be here.
5:10 Tara Hunkin:
So why don't we dive right in? And so you can give us your, obviously you have a wealth of knowledge and perspectives in this area. Why are therapies and treatments in your opinion limited in how they can help these out of the box kids?
5:26 Genia Stephen:
Yeah. So therapies and treatments are focused on remediating some aspect of what is happening for the child. And that may be very helpful, it may have some positive outcomes, but it's unlikely to fundamentally change who the person is and make them neuro-typical. And what we know is that neurodivergent people in our society are often marginalized. They experienced discrimination, they have a hard time finding places of belonging. And so we need additional approaches that are really focused on acceptance, belonging, relationship, and contribution to take us from therapies and to the good things in life.
6:10 Tara Hunkin:
Yeah, it is really important to think about that. A lot of parents when they first come across learning about a lot of different treatments and therapies are asking too, if I don't want to change my child. And the idea isn't about changing the child, in my opinion, it's about treatments and therapists are helping to improve their health and hopefully overall life outcomes. But in the end, our kids need to find a way to thrive as they are within society. So I'm really looking forward to hearing some of your insights in terms of how they can do that. So with that in mind, what are some of those universal strategies to help our kids build good lives?
6:58 Genia Stephen:
Yeah. So one of the things that's helpful to think about are valued social roles. So social roles are the way that we be in society. It's the way we interact with each other. Our role set up expectations for how other people see us and how we see ourselves.
It's the primary way in which we understand how to interact with each other. We can think about the question that's commonly asked when two people meet at least adults, what do you do? We're trying to understand who this person is based on their social roles? So there are both positive and negative social roles, and we want to focus of course, on the positive roles. Some of the negative roles that our kids might fall into are the role of eternal child or the role of menace and obviously we want to avoid those. And we want to think about, what are the roles that typical citizens of this age or typical people of this age have?
So for our young kids, that's likely going to be primarily family roles like sister, brother, son, daughter, grandson, that type of thing. School roles, meaning the role of student and recreational roles or interest-based roles like ballerina, drummer, hockey player, those kinds of things.
And when we think about the social roles that are typically available to neuro-typical kids, what we find is that those are the places where they build their relationships. Those are the places where they find their sense of belonging. Oftentimes what happens for kids with disabilities or neurodivergent kids is that we take a different approach. So the therapy approach gets extended into school where everything is special or different.
And so our kids don't typically fully fill those typical social roles and so they're seen as being very different by their peers. But if we can think about supporting them to fill the role of student in those typical ways, thinking about how they spend their time, how their routines are structured within the school day, whether or not they have access to the curriculum in the same way that the other kids do.
These are things that help both teachers and students to see the student as a member of the class and it can be really helpful. So we want to be thinking about not just the therapies and interventions, but then how does a typical citizen spend their day and what are the valued social roles that are common for this age group and for somebody who shares the strengths and interests of my son or daughter?
So the person who wants to be a hockey player is not going to be successful as a ballerina, right? You need to be catering this and making it precise to who your son or daughter is and building on those strengths and interests.
10:00 Tara Hunkin:
Yeah. So I know obviously every child is really different and their capabilities or challenges are different, but how do you see balance between catering to what they need in terms of supporting their needs, where they may be having some challenges versus actually balancing that citizen role within, for example, within the school setting. I think that's one of the challenges that we all face is we're trying to support them so they feel successful,
but at the same time we want to create that environment that makes it more inclusive for them at the same time.
10:40 Genia Stephen:
Well, I think what we do is we think about what that role is. So when you think about the average grade six student, for example, what are the routines for their day? What kinds of opportunities do they have both social and academic? What kinds of stuff do they bring with them? What do they look like? And this is not to try and make sure every child looks exactly the same.
You could look at 150 grade six students, they're all going to look different, but they all have the opportunity by grade six to have some influence over what they wear probably and their backpack might have something to do with some of their interests. And so they're coming into their own and grade six students typically have that opportunity to start kind of coming into their own. So you want to support that for your child as well. And academically, what are the subjects that the students are learning about?
So there may be accommodations or modifications that are required in order to support that student to fill that valued social role, but you start with the role and then you bring the scaffolding and the supports in around it, as opposed to starting with the scaffolding and the support and trying to make the role fit around that scaffolding and support. So most of us have specialists in our lives in some capacity. We have dentists, we have doctors, we've got accountants, lawyers, we have all these specialists that we bring in to provide us with the accommodations and support that we need in order to live the lives that we want.
However, all of those specialists are kept in their proper place as being in service to the life we want. And what happens often for kids with disabilities or kids that are neurodivergent is that the specialist becomes the point or the support becomes the point. And we lose sight of the fact that the support really should be in service to the life that the child wants or that we want for our child given their age and their ability to, because of their age, to participate in deciding what kind of life they want.
12:49 Tara Hunkin:
Yeah, it's a really, really good point that you're making, because I do think that as parents, we often get so invested in the treatment and therapy aspect, thinking that that is it, and especially when we're being often told that those early years are so important, that it's really easy to get the child lost in the oven and finding that balance is incredibly difficult.
And I love the way you flip that around in terms of thinking about the citizen and their role as a neuro-typical or a typically developing child first and then fitting everything else around it. So I think that's a really helpful perspective flip that I'm sure a lot of parents can relate to. What can you tell us about what the medical model of disability typically is that you see in the work that you do?
13:43 Genia Stephen:
So the medical model of disability basically says that there's something about the person themselves, something internal to the person that requires fixing in some capacity. And within the therapy and interventions model, whether it's good or bad, that is what we're doing is we're trying to fix or improve some aspect of the child. And that has its place.
There may be problems that the child has that require that kind of approach, but it falls down when it becomes the major model that we use to understand disability, because we're constantly thinking about fixing the person and we're ignoring that the location of actually a lot of the problems and challenges that are faced by people is actually in society. It's in the attitudes of the people around them.
It's in the structural barriers that our buildings and cities create or our communities create. It's within the systems and structures like an inflexible classroom, for example, that create real boundaries and challenges for our kids' full participation in life. And so it's I think really important for us to think about where is the appropriate medical model of disability and where do we want to cap that or put a boundary around it and say, there's nothing wrong with my child and the problems that my child faces largely exist because of issues outside of them and not because of who they are or not because of their impairment or their diversity.
And then we start getting into the social model and we can start thinking about what are the changes that we might want to invest in that are going to make it easier for our kids to find those places of belonging, to make their contribution in the world, to have those valued social roles. And so it's a shift in for some, a shift in where our attention gets focused and therefore what it is we're trying to change.
15:54 Tara Hunkin:
Yeah. I think that we can all say that we've come up against this in terms of everything that we do with our kids, medical or otherwise, is finding a place of acceptance and acceptance in a way that's inclusive. I think that's that's the challenge which is what you were talking about before is finding way to get them included in the model, as opposed to just being an exception to the model and people trying to make either a totally different path for them or not making appropriate adjustments or making it about them as opposed to making about the system that they're trying to work within. Do you have any examples of people that you've worked with, or in your personal experience where you've seen the switch and how that's impacted the child ultimately? And maybe even the children around them?
16:55 Genia Stephen:
The switch from the medical to the social model?
16:59 Tara Hunkin:
Yeah. Just really switching that perspective and how that's impacted the child once that's done.
17:08 Genia Stephen:
Sure. Well, I can talk about a couple of examples. I can talk about one family who started thinking about this and switched from some of their therapies, some of their OT and PT services to a local gym that has a trampoline program so the child was able to be in an inclusive program, still working on the same skills that they were working on before, but able to do that within the context of membership and becoming an athlete and becoming a friend, as opposed to just being a client of a service for that purpose. I can think of another family who started thinking about enablement for independence. And so instead of thinking about supports as being something that is entirely externally provided by another person in the form of caregiving, they started adjusting their home.
One example, this is for somebody who was older, putting a heat restriction on the shower. I'm not sure, I can't think of the right words for that, a thermostat on the shower so that their son could shower independently without fear of scalding. They adjusted the way coffee was served in the house so that he could pour his own coffee without risk of scalding. And so these little incremental changes in thinking about enablement and thinking about the socially constructed barriers to his independence has meant that he's been able to become far more independent than he was just a couple of years ago as he moves into adulthood. So those are two examples.
18:59 Tara Hunkin:
Those are great examples. I mean, in particular, the one that I can relate to the most is the first one in terms of finding ways to make what was therapy into regular activity. Because I think that, especially as the kids get older, but even when they're younger and they have movement and the OT really is about movement and coordination and sensory and all those things. So you can typically find activities that will be activities that all kids do that will either enhance. I mean, if you want to continue with the therapy, but it really takes the therapy out of therapy, which is really ultimately what we need to do, because I know from personal experience too, that, when we start, because OTs typically will give, and so will speech, language pathologists, and everybody else will give you a home program that you need to implement as well.
And the bottom line is that frequency and intensity and duration matters in those things, but then you become a therapist at home, so you're no longer a mom, you also become a therapist. And that could be very detrimental to the parent-child relationship as well ultimately. I totally understand where you're coming from in terms of changing that.
20:17 Genia Stephen:
That's what typically happens for kids is that they find, or they're provided opportunities to explore their world and develop their skills within the heart of community. And very often we just think about the kinds of therapies that there are. There's play therapy and music therapy and horse horse therapy, and art therapy. Well, those are things that all kids enjoy and those goals can be met just in those valued social roles of artists and equestrian and musician. But often we kind of pathologize those needs in our kids and so they get restricted in the ways that they explore those interests and the ways that they develop those skills. And the same thing happens in school.
A lot of the interventions and support that are provided in school could be provided absolutely in the classroom, depending on how the classroom is organized and how lessons are organized. And yet we have a medical model that says pull-out and fix on a one-to-one separate way, but there's nothing actually preventing that from happening in an integrated and inclusive way.
21:35 Tara Hunkin:
Yes, so true. Well, so we've talked about a number of all alternatives now. How do you define the good things in life? Like what is your ultimate goal for these kids and these families as they're pursuing this?
21:50 Genia Stephen:
Yeah, well, it's really interesting. There's been some research about how different societies across time and around the world define the good things in life and remarkably they're pretty universal. So there are things like having a safe home, having access to healthcare, but they're also things like making a contribution, being able to explore your interests, finding love, being able to be with people who appreciate you. That's what I mean by the good things in life are just those universal human needs.
22:26 Tara Hunkin:
So how would you recommend parents move forward with both themselves in terms of, I mean, you've, you've talked to us about that perspective shift, but also in educating others about how, like can you have these conversations with the teacher, with the family members, with the parents of the friends that maybe haven't been as inclusive, like how do you have those conversations to start to help change the people around us as well?
23:00 Genia Stephen:
Well, I think it helps to ourselves unpack as much as possible, our understanding of how people typically access the good things in life and it's through our social roles and recognize that there isn't an alternative path. It's not like you can choose segregated education and segregated residential options and segregated work options and expect the same outcomes - that doesn't happen. So, but that can be a challenge for us as parents to kinda have the chutzpah to be making the choices to keep our kids at the heart of community. It can be scary and overwhelming and difficult at times.
So I think doing the work ourselves is important. So one of the things that people can do, which may be scientific, but I'm going to talk about it in an unscientific way is to think really carefully about the kind of life they want for their child, and to write that vision down and then to share it with other people. So it can be really helpful if you are talking about, I want a life where my child gets to learn the curriculum and has friends at school and outside of school and graduates high school and is looking at employment options in an area that they really are interested in and that builds on their strengths. And I want them to live in their own home, and I want them to have a love interest and I want them to make contributions as a citizen.
If you're presenting that kind of vision at school or to friends or to family, then you can work backwards from that. If this is what we want for our sons and daughters, then what do we need to be doing now and today in order to help them. And while therapies and interventions may be a piece of that, they have to be in service to other things we're doing to help them to actually live that life. So I think that creating and writing and sharing a vision is one of the key steps that we can take to get allies on board.
25:06 Tara Hunkin:
I absolutely love that cause I can imagine too, at different phases as your child progresses, that you can involve them, obviously, in terms of what they want for themselves as they get older as well. And they may have a vision for just now when they're young, they tend to have that just now, but that's super helpful too, because typically what I've found is that people want to help, they just don't know how to. And they don't know what your child might be capable of necessarily, and they need help seeing that and seeing them in that role as well. So that sounds like an amazing exercise that we can all go through no matter where we are on the journey with our kids right now.
25:52 Genia Stephen:
22:53 Tara Hunkin:
I can't tell you how grateful I am actually that we met and that I've been able to have you here to talk about this. I encourage people to subscribe to Genia's podcast, but she also has something to give to you today for free. Do you want to just describe what that is and then we'll tell people where they can get it?
26:21 Genia Stephen:
Sure. So we have a package of eight social media posts for people to, as we were just talking about, reach out to other people and say, listen, this is what we are thinking about. This is what we're working on. This is the vision that we have for our child's life. And so the posts include statements and remarks of encouragement, and you can access those at www.goodthingsinlife.org/posts.
26:46 Tara Hunkin:
Wonderful well, we'll make sure we have the link both to your podcast and your website, and obviously those free posts for everybody because I think that's a really great way to start getting introduced to that conversation to the people around us, about what our children are capable of and the lives that we are striving to achieve for them and with them. Thank you so much for your time today, Genia, and I can't wait to see all the other great things that come from this conversation and the work that you do over at The Good Things in Life.
27:22 Genia Stephen:
Thank you so much, Tara.
27:23 Tara Hunkin:
So that's a wrap. Thanks for joining me this week on My Child Will Thrive. I'm so passionate about giving you the tools and information you need to help your child recover. And as they say, it takes a village, so join us in the My Child Will Thrive village Facebook group, where you can meet like-minded parents and stay up to date on everything we have going on at My Child Will Thrive. This is Tara Hunkin and I'll catch you on the next podcast or over at mychildwillthrive.com.
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