Transforming Adversity into Growth for Parents of Disabled Children

Hi and welcome to Navigating Life as we Know it. I'm your host, Steve Johnson, and I'm here with my co-host, Kerry Johnson. Hello, Today's program is an interview with Chris Burbank and Linda Hoopes, co-authors of Embracing Another Normal resilience stories and strategies for raising children with disabilities.

How did you?

run across this. Actually, they were referred to me by another podcaster up in Maryland who said hey, Steve, this sounds like a good topic for you.

So I know you've read the title of the book, but can you give me a little bit more information about what it really entails? I certainly can.

Chris Burbank is Andrew's mom, and Andrew is a young man with cerebral palsy. Chris is also a certified leadership coach, helping individuals and organizations build resilience and create more joyful lives. Dr Hoopes has a PhD in industrial organizational psychology and a minor in statistics and psychometrics. She believes that everyone has the seeds of resilience within them and that learning to weather life's storms is important for all of us. I'm excited about what a great resource Embracing Another Normal is and how it can help groups of people go through the book, challenge by challenge, and maybe have discussions about how this could change their lives. So let's get on to the podcast interview. Today we're visiting with Chris Burbank and Linda Hoopes, co-authors of Embracing Another Normal resilience stories and strategies for raising children with disabilities. Linda Chris, welcome to Navigating Life as we know it.

Great to be here, thank you.

I hope we can do this justice with the time we have together today, but there's a lot of valuable material in those six challenges and I really recommend people get the book and read it. Every great endeavor starts somewhere and I'm kind of curious as to how the two of you got this book started. Whose idea was it and how did you progress with it?

I have often wanted to tell stories of other people's lives, but it really started with Linda. Linda can explain how it started and then how we got involved.

Well, the focus of the book is resilience stories and strategies specifically for people raising children with disabilities. My interest came to it from the resilience angle. I'm really curious about how we work our way through different challenges in life, and I got particularly interested in how we do that with specific groups or populations or sets of challenges. I actually invited several people that I knew who had interests in different areas to see if they would be interested in co-authoring some things with me, because I don't know enough about the world of raising children with disabilities to write a book about it. Chris knows that I bring some perspectives on resilience and so we put all that together, and there are several other works in progress with other different populations.

So I can take that one. I have been involved in the world of disabilities since my son was born. He's 27. I decided that I really wanted to take the kinds of modalities and theories that get used in leadership, coaching in organizations and apply those to families and parents, specifically of kids with disabilities, because they are leaders in their homes and in their families and in their communities, as well as at work. And I was introduced to Linda because Linda has something that she's developed which is an assessment tool that can be used to help people learn how to become more resilient. And so I became certified in this tool through Linda's organization and I use it with clients all the time. And I became familiar with Linda's book Prozilians and her model, and when she approached me I said, oh my goodness. Of course I would love to do this because I think it's a perfect fit for families with disability. I will go on record as saying I have not always been a big fan of the word resilience. I have often thought that people expected me to be resilient in the face of challenges that I really was not prepared to manage or contend with. I didn't. You know, I had one son. Everything went fine. I had another son, born four months premature, and the journey started. And so over the course of this project, I once again fell in love with the concepts and a lot of what Linda brings to the discussion because, as she can elaborate, we spent a lot of time talking about prozilians, which is proactive and not necessarily reactive to some of the things that are difficult in life. I can speak for myself. I wanted to be able to encourage people and help them see that they could not just survive but actually thrive but honestly, the kind of book that I wish somebody had written and that I had had access to when my son was much younger. We've tried to couple stories which kind of bring information to life and give people, I think, no-transcript hope and a vision of what could possibly be. But we've also tried to be really practical and realistic and not try to sugarcoat things, and I think Linda's model is particularly applicable to families and parents of young people who are different from what families and parents expected.

Well, one of the reasons I got interested in this particular topic is that I have a sister who has an adult daughter with Down syndrome and I've watched her in that process of navigating this world, and I have, of course, several friends and other people that I know who are in that world. So I echo what Chris said about what we hope people will get out of it in terms of just the sense that you're not alone, the sense that there are. Although everyone's world is a little bit different, there is some commonality to the challenges that we face and maybe some things that we can learn from other people that have walked that road.

My father always used to say that all of us are smarter than any one of us, and I think when we learn from other people's experience and their stories, we all benefit. Chris, I'm sure you've heard the one where people say, gee, you're such a good mom. God only gives special children to special people. It almost makes me want to say, well, I guess you're not so special, you just have a normal kid, right.

Yeah, the one I always liked was God only gives you what you can handle.

He or she had no idea.

The other thing, steve, that I think is important is that, yes, the book is written for parents. There's a note specifically to parents in the beginning, but I think for us it was also and Linda speaks to her niece I felt like this was an opportunity for us to kind of let people in, people who don't necessarily have a person with disabilities in their family, but maybe they have a neighbor, or maybe they have a friend, or maybe they are just a kind and caring community member, or maybe they work with young people, but they only see those people in those families at school, and I thought this is an opportunity to share some stories and to have real people talking about what they're experiencing, so that other it can shed some light for other people and help them understand a little bit more.

You know, I just gotta tell you, when I was reading through here and I saw the six challenges and how they're treated in the book, I was thinking this book needs a discussion guide, because parents getting together would be able to hold themselves accountable and learn from each other as they're reading the book. So I'd like to suggest that you create a discussion guide.

I love the enthusiasm. I mean, I think when we were pulling this information together, we had probably in our minds and imaginations ideas. Now that the book is out in the world, we're having conversations with organizations about a virtual info night or having this be a book group book that gets a facilitated discussion afterwards. I love the accountability piece. It's part of the reason why we put the questions in at the end, because you can ask those questions of yourself, but you can also talk about those questions with somebody else and then everything that you're learning becomes a little more powerful.

To build on that. Another place I could see it being used is in a curriculum. My walking buddy in the morning is a woman who's retired as a physical therapist in the NICU and so she really feels like it would be helpful for a lot of people who are in that field and so on that are working with families and children with disabilities, so that they really have a little bit more of a sense of empathy and understanding of what those folks are coming into and with and are just wrapping their minds around, especially when you're at that early age.

I'd like to think as organizations, we talk a lot about continuous improvement and talk about development opportunities. I can see this book being a really valuable tool to an employee resource group in a corporation, as you mentioned, with educators. Any time that we can broaden our perspective as humans, I think it's time well spent. And learning how to look at things that, even if we're involved in them, looking at them from a different perspective, I think helps us help others and help ourselves.

I'm sure some parents would probably agree that they'd be lucky only to have six challenges in a course. There's more than that, but there are six primary challenges here. And how did you come up with those six challenges and decide what order to present them in? And, incidentally, I think Meg's story was wonderful.

Ah, I love hearing when a story touches somebody, steve. So thank you for sharing that. Six challenges we identified through surveys and individual conversations, more than 200 families, siblings, parents. We also talked to educators, but there were six challenges that kind of rose to the top. The first one that we addressed just is the one that you confront initially, which is an adjustment. Right, it's an adjustment of what did you expect versus what did you. What is the child that you have? And there's a lot involved with that. There's many feelings that people either haven't experienced, certainly didn't expect to experience. There's a grieving process for, right I'm speaking to the choir right, the child you don't have, the child you lost that you thought have. And I think that Meg's experience that she shared, where her mother came over to babysit and her mother took the baby out and Meg sat and she just she's just grieved for all these things that she didn't have, and there was sort of a lightness, I think, that came with that, a lifting that like, okay, I've gone through that step, now I can move on, now I can more proactively engage with my life that I have not the life I thought I would have and, interestingly, some of the things that she grieved. She ultimately did experience. She grieved that her child was never gonna go to a school dance. Well, fast forward, and her child did experience that. So one of the things that I'm repeatedly reminded of with these stories is that we cannot predict the future. It obviously is gonna be hard, but there are other things that we just do not know. I was reading a little bit about grief today, and one of the things I was reading about spoke to this notion of how grief can isolate us. If we don't figure out how to share our grief, we lose connection with the world, and so this is where I think applying Linda's model really helps us, because what we can say is and Linda can speak to this but what we can say is okay. So I'm experiencing these things, I'm adjusting to this new situation, but there are ways I can behave. There are muscles that I can strengthen that will enable me to adjust more effectively and, in turn, model behavior for other people, model behavior for my child.

I don't know, linda, you're the expert on this, but that's how I looked at it, I wouldn't put myself out there as an expert on grief, but grief is part of many of the challenges that we face that call on us to be resilient. I think of a lot of it in terms of energy, and the book talks about this a little bit but these challenges call on our physical, mental, emotional and spiritual energy and I know that in this first challenge in particular, there's sometimes a spiritual challenge, which is I had this vision of how things were gonna be. I had faith that this was gonna happen and I've now lost faith and trust in the universe or whatever it might be, because I just got knocked upside the head. There's emotional energy that it takes and for many parents there's a ton of physical energy just around the physical caregiving for a child that has special needs, and then there's the mental energy of learning and figuring and what's possible. So I just think of all the ways that these things come into play. I think it's important to not talk about resilience as like a thing, a personality characteristic. It's a set of actions, it's a way we move through things. I've said resilience is a verb and we resilience our way through these challenges because if we start labeling ourselves as I'm resilient. I'm not resilient, whatever. That's not a recipe for happiness.

No, it's not a recipe for happiness. It seems to be another way to judge ourselves and keep track of our failures.

We invite readers in this book to sort of read in whatever order, and I envision somebody who's in the thick of it, like in school, who picks it up and looks to challenge number five managing education. But really these challenges build on one another and one of the things that you learn is that, in order to adjust, you have to fairly quickly learn how to balance your family's needs, your job, parents, whoever it is and your own needs. And then, once you do that, well, there are lots of ways to do that, but one of the ways you do that is by learning to let go a little bit. That's the third challenge that we talk about, right? And then, when you learn to let go, that enables you to prioritize the relationships that you have with your partner or your medical. So the challenges and the chapters move somebody through it, even though we've invited people to read it in whatever order and appeals to them.

Challenge number three letting go. That's really hard for parents, of course. I know that personally because we feel a greater sense of responsibility for a child that has a developmental disability and struggles in some things. But we need to let them take chances and fail, because that's how we learn. Not allowing our children to learn when things don't turn out as planned as a result of their own choices is in itself disabling and it sends the wrong message. Basically, we don't trust you.

Blah.

One of the biggest problems I think families and parents have is understanding the concept of self-care, because they think it's selfish.

It speaks to the comments Linda made earlier about energy. Right, I mean, I remember a time in my life where I was working and I would get up and in my morning commute on a train I would read the newspaper. I didn't think anything of it, it was how I started my day. And yet when my kids were older and I was at home and I would put kids on the bus and everybody was finally gone, the thought of sitting down and reading the paper for 20 minutes felt incredibly indulgent. There were so many things that people needed me to do and in hindsight now I kind of look back and say that wasn't indulgent, that was self-care, right.

Absolutely. Self-care is an investment in yourself, but it's a hard thing for parents to do because they feel like they're prioritizing their needs over their child's. In challenge number four, prioritizing relationships, the first couple is Deborah and Ben, who have a disabled daughter named Makayla. What's troubling about this is that's an all too common situation where maybe in this case, it's mom is doing the lion's share of the work and supporting Makayla, and Ben just goes to work and comes home and says, well, he's doing his bit by making a living for the family, which is very true and it's important. But what he doesn't realize is that when he comes home from work, he's going to Deborah's workplace, which is the home, and it's unfair, it's unequal. Now there's many other partnerships, of course, that are important too, because parent of a child with disabilities typically has a very sparsely populated circle of support around them, since most of their time is dedicated toward providing care for their child.

Yeah, it's, one of the muscles that we talk a lot about is connection, and are you, when you get into a situation that really could use some prosilience, are you a person who sort of retreats inward, or do you branch out and try to connect and maybe even learn from other people about different approaches and things? And I don't think you can overestimate the importance of connection for families of young people with disabilities, because it can be very isolating, it can be very exhausting and if you haven't built that network of people that you feel connected to it's, the journey is much more challenging. Steve, I think this is where the muscles come into play. I think there's even a quote in the book about attitude and the role that attitude can take a challenging situation. The right attitude, it can completely transform it. And so I don't know, linda, if you wanna speak to these muscles, but I think that having an attitude of positivity right, it starts there with school. It could be that simple for some people. There are other muscles.

Well. So how you talked at the beginning about how you sometimes don't like the word resilience or you get tired of it, which I do as well, even though I've been talking about it for a long time Positivity is another one of those that people sometimes have a visceral reaction to don't tell me to be positive or don't tell me to calm down. And so when we say that there's this muscle of positivity, this is not the muscle of pretending that everything's okay or putting paint and glitter on everything. It's the muscle of saying in the midst of all this complexity, I choose to put my attention on the things that are going well, the possibilities that are there, without denying that all of that is there. It's really a choice to interject a little bit of lift or a little bit of joy where we can, or just take those moments to appreciate the way the light is coming through the window in the morning, just those things that lift our souls and our spirits. Because these things are contagious. Negative emotions are much more contagious than positive emotions, and so, in order to keep things moving on a happier scale, if you will, it takes work to intentionally interject those positive ways of being, and people pick up on that from us. So if we can come in with a little, with a smile or a little bit of cheerfulness or an appreciation or a compliment for the people around us, or be able to spot some hope someplace, that makes a huge difference.

It's true that negativity is a communicable disease and too often you get it from your friends, but nobody really wants to have a party pooper in their life. Cultivating an attitude of gratitude not only helps you, but it really lifts the people around you. Negativity is insidious. It's something we try to gravitate away from if we don't get sucked into it. So sometimes you have to alter friendships or avoid some people because they're not good for you.

I think that's you know. We, as I mentioned, we interviewed educators in the research for this book. And comparison is, you know, a killer and that happens a lot in school. Well, my son gets three hours of speech. Well, my daughter only gets two hours of speech. Well, my you know school district is paying for outside reading, supplemental reading instruction. Well, my school district will do that. And so I think you know, harkening back to some of what Linda said, which is focusing on what's going well and trying to leverage that into other things, it just makes sense, and one of the things that I'm very proud of about this book is that I think it makes sense. We've had, we've had people read it and just talk about it being really practical. It's not filled with platitudes, it's not. It doesn't sugarcoat it, it doesn't say it's not hard, but it provides practical things that make sense that people can try to think about and apply to their lives.

Oh, I agree the book is very positive. Those challenges that you mentioned in the book are not easy and they can sometimes seem insurmountable. But when there is a way out because you have relationships and people can share positive things with you and you can see that it's, it can work, it makes things a lot easier and so you know we can be that for somebody else it will, in turn, come back to us and just maintaining an attitude of positivity as much as possible, and when you stumble and fall, then somebody else can help you. Basically, we need each other.

Absolutely Well, you know, you just touched on one of the muscles which is experimenting, one of the. So there's a there's a muscle around trying things. There's a muscle around getting out of your comfort zone and seeing what happens if you do something, knowing that it might not work, and that's one that shows up in a lot of places. You know, let me try this strategy with this teacher, or let me try this strategy with my child and see if it works to do this thing. But when people aren't engaging that muscle, what they're often doing is sticking with with what feels comfortable and familiar, and and so the idea that we can try things, that we can build on things, that we can learn from our experiences and try experiments is, you know, to me it's just an example of what Chris was talking about in terms of it's just pretty practical.

Yeah, it's interesting when you try something new and you think it won't work, but then it does. Okay, I love that.

I love that you you call that out, steve, because I think part of you know the challenge with this book is that people people with disabilities is a huge, broad spectrum of human beings. As you mentioned, each one of these chapters could be its own book. So what one person reads who has a child with very profound, you know, physical limitations is going to be very different from what somebody reads whose child has a medical, complex medical condition that's life threatening and it's going to reduce their life expectancy and and you can, you know you can play that game. So what we tried to do with each of these chapters was to showcase different people in different situations, different diagnoses, but what you see is there's, there's lots of similarities and in fact we even had a reader say it was a grandparent who said that I was really touched by how similar we are in many ways as families, regardless of what our differences are. And when you talked about the planning for the future, in addition to giving some of these tools like a letter of intent, part of what I was struck by when I interviewed families and parents was just the fear. Right, the fear can be paralyzing and the fear is what requires the prosilience to get you moving in the direction that's going to benefit your family. What are you afraid of? Why does that, you know? Why does that paralyze you and what can you do to take one small step in the in the right direction?

which is far more proactive and far more healthy. And far more healthy than just burying your fear and putting your head in the sand and hoping for the best, which I know a lot of people do. That, yeah, and one attribute I would attribute to special needs parents, I know, is that but we have the ability to understand somebody else's situation, even though it might be dramatically different physical or cognitive ability, and so there's a greater sensitivity to the needs of other people and having this book can help you help somebody else. If you've been through the lived experience, it's impossible not to relate to this book. My son's 35. I know other people who've got a 12 year old with a disability. They might not understand that yet at their point, but we with experience can certainly be helpful to them. But that book could be the one thing that connects people. Chapter seven is titled resilience and prosilience and in that chapter you have a self assessment on resilience building blocks. Could you expound on that a little bit please?

So the idea is that we have a whole toolkit or a set of paint brushes or whatever that we can for challenges, and there are four sort of big chunks of content. One of them, the very first building block, is the ability to calm ourselves. Now, when someone says to you, calm down, it doesn't always, you know, it doesn't mean it's bad advice, just because it's annoying and aggravating for people to say that. But the idea of self regulation is something that we may be more familiar with when we can think clearly. That's. That's an important first tool. There's a second building block that is about choosing our strategies and that has to do with deciding essentially what battles to fight. You know when to get in there and to try to change things to. You know to put to slam your fist on the table and make things happen, when you need to adapt to what's going on, because you really are not going to be able to change it, and when you might be able to reframe it as an opportunity. That's so. That's that's. The second building block is those strategies. Then we've talked about muscles. So just really quickly, positivity, confidence, priorities, creativity, connection, structure, experimenting. So we go into each of those, which are some mindsets and skill sets that everybody has and can learn how to do even better. And then, finally, we've already touched on the notion of energy around protecting our energy, managing our energy, replenishing our energy. So the framework that we talk about really encompasses all of those, and the design behind it is that some challenges are momentary, sometimes it's really about just getting over a hump right, sometimes it just our lifelong, and it becomes much more of an energy sustainability game, and so by knowing these different things and drawing on them as appropriate and intentionally building our capability to do these things, we can work better as new challenges arise, as old challenges come up again. So so that's really the idea behind the framework.

And Steve. I'll just explain a little further that this framework is utilized all over the world and with organizations, corporations, nonprofits, government entities. One of the things I love about this is that parents and other people are going to read this book. It's going to apply to their world and the things that are disability related, but then it has all these other applications. You know, I was with extended family over the weekend and so much of what's in here I was seeing in my interactions staying with you know a team. Right, it might be a team of people that you know you're working with in your job. It might be a school team, but it might be your siblings and you're a team supporting your parents as they age. So it's one of the things I really love about the things that Linda was just speaking, because they have multiple applications across a lot of different domains.

It's almost like getting fitted with corrective lenses All of a sudden, you can see the world more clearly.

One of the things I learned from Chris in writing this book. There were two concepts that really just smacked me, and one of them is this idea of the curse of capability and the idea that so often people will say, oh, chris, you're so good at all this and so therefore, you feel like you have that to live up to and that you can't afford to let it down because then you'll be disappointing people who have these expectations. I actually find that, because I'm the person who talks about resilience, I sort of have a certain thing going on there too, where I somehow now need to be more resilient than the average bear most of the time. So last week, when at midnight my husband said, honey, I think we need to go to the emergency room, it was like all of this kicked in, you know, and you have the good days, you have the bad days, you know. Fortunately we're on the other side of that and everything's going fine, but you know. But it's like the life lessons when you have a vocabulary and a way of thinking about it, it actually can be helpful.

Wow. So all of a sudden you're expected to be the most resilient person around. That sure adds a lot of pressure. How do you cope with that?

Giving ourself grace, giving everyone else around us grace.

Yeah, grace is kind of like hallmark. They used to say it's the gift that keeps on giving Great answer. Before we wrap this up, just want to add, for listeners, that the book is only a little bit over 100 pages long. It is full of wisdom, great practices and plenty of solid advice and how to embrace a new normal, how to deal with six big challenges, and it's a great book to share with others. Linda, chris, is there anything else you'd like to add?

I've got some bad news for you. When we formatted it into the final version, the pages are a little smaller, so it's actually over 100 pages in the final version.

Yeah, I'd say it's just as long as it needs to be, and you guys did a great job with it.

Steve, you asked if there was anything to add. There's one thing I do think is important for people to know I happen to have a son who's severely disabled physically due to cerebral palsy. He has intellectual disabilities but he is very verbal and he has opinions on things, and even many of the young people I know who are nonverbal have opinions on things. So as we were developing this even though it's developed by a parent in me and for parents we worked hard to reflect input from young people with disabilities, self advocates, people who have had experiences whose parents either were great at letting go or really struggled with letting go, with parents who you know, siblings whose parents didn't plan for the future, and so I know there is that mantra within the disability community of nothing about us without us, and so I just want to point out that we had some wonderful young people who were able to add dimension to the book, and it's reflected in the book as well.

Is there anything else you'd like to add?

For me. I would just say what a delight this whole process has been. I've learned a lot, Chris and I it's been like an ongoing conversation, just moving back and forth to figure out how do we tell this story together, and so I couldn't be more delighted with how this has all come to be.

And I would just like to say I'm really honored that people trusted us with their stories because we're certainly I'm sharing things from my own family, but we're sharing a lot of families deepest fears and frustrations and accomplishments, and so I'm very grateful to all the people who helped us and also grateful to Linda, because she really was able to help give us a format to do that. Well you got to do more together then.

Thank you, Linda. You said there's six challenge series. You know what the other five are going to be or are.

Oh, so each one has six challenges. This one has six challenges. It's going to be an ongoing thing and there could be no end to it. There may be more than six, so so just stay tuned. This is the first of hopefully many.

Okay, and are they going to show up in one big book sometime, or just separate ones?

There are so many different audiences that I'm not sure that they're going to change, right you know firefighters and children with disabilities and people with serious medical diagnoses and people navigating. Don't forget to retirees, right, yeah, so so you know some people have overlapping things, but you know we'll see how it goes.

Thank you for your time and for sharing your stories and your book with us. Best of luck.

Thanks so much, okay, thank you.

Hi and welcome to the chat cafe portion of our podcast. I'm your host, kerry Johnson, and I'm here with my co-host, steve Johnson. Hello, so very interesting conversation with Chris and Linda and the six challenges. What were some of your favorite parts, or big aha moments?

You know there's a lot of aha moments and this could have gone on for a long time. Like I say in the interview, there could be six books here on adjusting to another. Normal could be one book. Number two of the challenges is balancing needs. Oh my gosh, we spent all of our life trying to balance the needs right.

Yeah.

I think the most important one to me was the letting go. That's where you actually let your child experience some risks and maybe some losses in life, because that's how they learn. But we are uber protective of our kids. You know, we want to, don't want them experience any failures and we protect them.

It's almost like they're in some kind of a protective bubble wrap, bubble wrap, yes, right, and you know I mean, and part of that comes from a good place in our hearts. You know, they, they already, they started a disadvantage. Okay, they've already been hurt yeah, physically, whatever and are not able to do so much.

And we also brought brush strokes here, we saw they got neurotypical brothers and sisters who experienced a lot of things in life that they never will, so we have this feeling is not a matter of guilt, but it's a matter of parental protection. What they really need is a as a shot at being independent and being supported in making their own decisions and learning, and that's how. That's how we learn. Right you know, I don't know how many times I fell off the bicycle before I learned how not to fall off a bicycle, but it was substantial, so there's a lot of things in here. It's packed with a lot of very interesting concepts. I like where Dr Linda said resilience is a verb. We're going to resilience our way through this you know yeah and then she talked about pros, aliens.

You know, that reminds us of when, shortly after Liam was born, he was still in the neonatal unit. And we're speaking to the neonatologist and we said so you know, what does this mean for his, for his life, for his future? That he has this grade three and four bleed, and what is that going to look like and what is that going to do? And he said I don't know.

You know that is so much better. I have so much more gratitude and respect for Dr Ogata, who told us I don't know, maybe he'll walk with a limp, maybe he'll need crutches, maybe he'll need a wheelchair, we don't know. So he didn't what he didn't do, he didn't know, I know I've heard so many parents say Well, we're told that he would never do this and she would never do that. Dr Ogata never said that. No, he says we don't know yet.

I so appreciated that because that that then allowed me to set my expectations high. I had to adjust them as we went along, but at least I was able to. I had my path up here. And then as things happen and okay, we have to adjust, we have to adjust, move it down, move it to the left, whatever. But at least I had that option, I had that availability and I really appreciated that. Hi and welcome to the chat cafe portion of our podcast. I'm your host, kerry Johnson. I'm here with my co host, steve Johnson. Hello, so very interesting conversation with Chris and Linda and the six challenges. What were some of your favorite parts or big aha moments?

You know there's a lot of aha moments and this could have gone on for a long time. Like I say in the interview, there could be six books here on adjusting to another. Normal could be one book. Number two of the challenges as balancing needs. Oh my gosh, we spent all of our life trying to balance the needs, right, yeah, I think the most important one to me was the letting go. That's where you actually let your child experience some risks and maybe some losses in life, because that's how they learn. But we are uber protective of our kids. You know we want to. Don't want them experiencing any failures and we protect them. It's almost like they're in some kind of a bubble wrap, bubble wrap, yes, right, right.

And you know I mean, and part of that comes from a good place in our hearts- you know they they've already, they started a disadvantage. Okay, they've already been hurt and are not able to do so much.

They got neurotypical brothers and sisters who experience a lot of things in life that they never will, so we have this feeling is not a matter of guilt, but it's a matter of parental protection.

Right.

As parents were bound to determine, to make sure that their life is full and good, but unfortunately that's usually by our standards and not necessarily theirs. What they really need is a shot at being independent and being supported in making their own decisions and learning, and that's how. That's how we learn Right. You know, I don't know how many times I fell off the bicycle before I learned how not to fall off a bicycle, but it was substantial. I like where Dr Linda said resilience is a verb. We're going to resilience our way through this. You know, yeah, and then she talked about prosilience. So what's the difference between prosilience and resilience? Well, resilience is about how you respond to challenges and prosilience is about how you plan intentionally to prepare yourself to deal with them. It's about being proactive. You know.

That reminds us of when, shortly after land was born, he was still in the neonatal unit. And we're speaking to the neonatologist and we said so you know, what does this mean for his, for his life, for his future? That he has this grade three and four bleed, and what is that going to look like and what is that going to do? And he said I don't know.

You know that is so much better. I have so much more um um in compassion for Dr Ogata who, instead of saying, well, don't expect him ever to walk, or he's not going to be able to talk, or anything else, he just said I don't know, maybe he'll walk with a limp, maybe he'll need crutches, maybe he'll need a wheelchair, we don't know. So he didn't what he didn't do, he didn't limit us I know, I know I've heard so many parents say well, we're told that he would never do this and she would never do that. Dr Ogata never said that, no.

He says we don't know, yet I so appreciated that, because that then allowed me to set my expectations high. I had to adjust them as we went along, but at least I was able to. Again, I had my path up here.

Yeah.

And then as things happen, and okay, we have to adjust, we have to adjust, move it down, move it to the left, whatever, but at least I had that option, I had that availability and I really appreciated that.

Well, that brings us to the end of another episode of Navigating Life as we Know it. We thank you for listening and we'll see you soon.

Steven Carey have been your hosts. My name is Alex and I'm the producer of Enwaki. Daniela handles all of our social media and general communications, and Holly is our website guru and mistress of the blog. Thanks for tuning into our podcast and please like, follow, subscribe and share our podcast to help us grow. You're the best. This has been a production of Envision Media Group LLC.