My guest this week is Rev. Mantu Joshi, an author, minister, and instructor on disability at Western Michigan University. He is the facilitator for Family Foundations at the First United Methodist Church. He has been a resident chaplain with the Oregon Burn Center and Randall Children’s hospital, and has appeared numerous times nationally on NPR. He is author of the popular book, “The Resilient Parent: Everyday Wisdom for Life with Your Exceptional Child”, which ADDitude Magazine has called one of the eight most important books for parents.
In this episode, Mantu and I discuss how parents can find resilience through mindfulness, especially for those who have children with special needs, sensory issues or disorders. Mantu offers personal insight as a special needs parent and enforces parents with the confidence, tools and tips they need to acknowledge and accept their feelings. Parents often place the needs of their children above themselves, disregarding their feelings out of guilt leading to heightened anxiety and depression.
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- Resilience commonly is understood as a bouncing back effect
- Psychologist Norman Garmezy’s risk assessments studied the ways that people deal with resilience and looked at it as manifest competence despite exposure to significant stressors
- Becoming a resilient parent
- Resilience includes the process of change within ourselves, not just a form of bouncing back to where we once were
- The act of moving forward with change is an acceptance to new growth and who you will become
Dealing With Grief as Parents with Special Needs Children
- Grief is often overlooked in parents, especially those with children who have special needs
- Processing and accepting this grief is very important
- Grief is not only related to the loss of someone in this instance, it applies to all facets of life
- The four tasks of grief
- Accepting the reality of the loss
- Processing the pain of grief
- Adjusting to the world without that person
- Maintaining a connection
Helping Parents Acknowledge and Accept Their Feelings Without Guilt
- Take 5 minutes each day to write down what your expectations were of parenting in one column and another column write what you have actually experienced
- This allows you to work on acceptance and receive a sense of freedom
- Also allows your mind to move on and begin to create and cultivate new ideas for your family
- Remember: It is okay to experience feelings of loss as a parent
- It often helps lead to you becoming more resilient on your journey of parenthood
- Each stage of development in your child presents new changes, challenges, and recurring feelings of loss
- Be present to the moment
- Mindfulness leads to empathy
- Practice focusing on the now, not all the whats, ifs, or buts of the future
- Being present to your child in the stage they are in today
- Let go of the outside factors, or “the storm”
- These factors inhibit your ability to express empathy in the now
Two Simple Practices to Create Calm in the Midst of Chaos
- Keep something symbolic in your pocket or purse that acts as a reminder to help you find your grounding again
- Simple mind and body practice:
- Concentrate on your tongue and eyes
- Are our eyes soft? Do the muscles around them look relaxed?
- Are you gritting your teeth? Is your jaw tight?
- Focus on your tongue and release your jaw while taking deep breaths
- Concentrate on your tongue and eyes
- These kinds of practices will aid in re-connecting you to your physical self and allowing you to calm down
Episode Intro … 00:00:30
A Resilient Parent Story … 00:02:55
Defining Resilience … 00:08:44
Helping Parents Acknowledge and Accept Their Feelings … 00:19:18
Practicing Mindfulness … 00:23:15
Where to Start … 00:27:14
Episode Wrap Up … 00:35:36
Dr. Nicole Beurkens:
Hi Everyone, welcome to the show — I am Dr. Nicole, and in today’s episode we’re going to be talking about a really important topic that I think isn’t discussed nearly enough. And that is the emotional health and resilience of parents who have special needs kids, and I can’t think of a better person to have on the show to talk with us on this topic than my longtime friend Mantu Joshi. Reverend Mantu Joshi is an author, minister and instructor at Western Michigan University, where he teaches on disability. He is the facilitator for family foundations at the First United Methodist Church, he’s been a resident chaplain with the Oregon Burns Center and Randall Children’s Hospital and has appeared numerous times nationally on NPR. He is the author of the popular book, ‘The Resilient Parent: Everyday Wisdom for Life with Your Exceptional Child’, which Attitude Magazine has called one of the 8 most important books for parents, and has been called one of the most important resources for parents of children with sensory issues by Lucy Miller, author of ‘Sensational Kids’. I can say on a personal and professional note, it’s an amazing book and we recommend it very, very often at our clinic.
Mantu and I have know each other since college, so it’s been a long time now and I’m sure that neither of us would have guessed that our lives would intersect in this way after all these years around supporting special needs kids and families, but we’re going to talk today about how parents who have special needs kids and may be experiencing some sort of empty emotional, spiritual, or physical tank — because that happens, we get depleted — how we can begin to get a sense of self and wellbeing again. And in order to enjoy even the most difficult parenting situations, and I know that this is a topic that’s going to speak to many of you on your parenting journey. So let’s go ahead and dive in. Welcome to the show, Mantu!
Rev. Mantu Joshi:
Thank you so much for having me, Nicole.
So I would love to start out by having you tell our listeners your story of how you came to be interested in this, how it is that life and your family led you to a point where you would write this book, because I think it’s really helpful for parents to know what your context and perspective is, so can you share a bit of that story with us?
I’d love to. And I think it’s a story which a lot of us with kids with special needs can identify with. It’s this sense of being in the valley. There was a time where having, at that time 2 kids with special needs, and their issues were bouncing off of each other and I was a stay-at-home parent, I had given up my dream job to be home full-time because it was needed. And in that space of time, I could just feel my spirit becoming depleted just by the physical and emotional rigor it was taking to be a parent. And the more I became down, the more isolated I became, and it was getting hard to even just kind of be out of the house without the kids at any time. And when I was with the kids, a lot of times, there were emotional outbursts and whatever I was planning to do just never happened.
And I began to feel depressed, began to feel the weight of the journey, and at that time, my spouse gave me some really, in retrospect, some life-changing advice. She said, “You know what? I know how hard you are working. I think you need some time to be able to write.” And that time, I just… I don’t really think of myself as a writer. I have written sermons, as a minister in the past, but I hadn’t really had tried anything like that before. She said, “No, you know? I think you’re a writer. And what we’re going to do is we’re going to figure out a way for you to have an hour off, maybe even an hour and a half off a week.
Somehow we’re going to make this miracle happen. We’re going to have an hour and a half a week off.” And at that time, that seemed like crazy talk. And we found, by some miracle, someone who was willing to watch out kids for an hour. And I ran like crazy to a coffee shop and I wrote for an hour, hour and a half, once a week for 2 years. And that’s all the time that I had.
And toward the end of that time, I began to also have some time to meet with other parents who have kids with special needs in a small Portland coffee shop. I was delighted and surprised when a publisher jumped on it right away, and it just kind of went out into the world.
Yeah, and it doesn’t surprise me that a publisher jumped on it because this is sort of the unspoken part of all of this that everybody who is the parent of a child with special needs recognizes, that this, how it impacts us as an individual, as parents, as a couple, as a family — it’s huge, but there’s not a lot of people talking about it and writing about it. And I actually didn’t know part of that story, I didn’t know that it was written like that over the course of that time. That is amazing, and really, a testament to what you can really get done even if you only have small periods of time to do that.
You know, it was one of those things where I would not have thought it possible. But the writing of it, it was a healing process for me, as well as listening to other parents. And I never gave them some of the advice in the book to those parents in the coffee shop. It just didn’t feel right. I felt like that was a time for listening. But I wrote down what I would have told them and myself, and incorporated some of the things that I had learned as a chaplain, in my training as a chaplain and working with people who were dealing with some really unimaginably difficult experiences with their families.
Yeah and you know — so much of the focus when a child has special needs or challenges of any type, so much of the focus is on the child, right? And on the therapy that we need to get for the child and what needs to happen for the child in school and all the things around the child, and really what I always found professionally in my work with parents is that we need to be focusing on the parents. Doesn’t mean we don’t focus on the kid, but it means that parents are a child’s best resources. Above and beyond any type of therapy, any professional, any school, any whatever — parents are a child’s best resources and when we are taking care of parents, and taking care of ourselves as parents, we can do such a tremendous amount of good for our kids and for our families.
So when I first saw the book, when you told me about it before it officially came out, I was so excited about this because it gives peoples many practical tools for thinking about that piece that really isn’t talked about. And I think for parents out there who are listening, who are like — uhh, I don’t have any time to think about myself or take care of myself or do any of those things, what I love about the story that you shared is — even with really brief amounts of time, we can all find a few minutes here and there and we can all find some opportunities here and there to implement some things that are going to support us, support our families, so I love that. I would like to have you define the term ‘Resilient Parent’ for people, because it’s the title of the book and I think we all have a general sense, maybe, of what the word resilience means, but I would love for you to share how you are using that. How are you defining resilience in this context?
So often, we think of resilience really being about bouncing back. If you have an image of a rubber band ball in your head, this idea, you throw it against the wall and the ball comes right back to where it was. And this was kind of what resilience was thought of for a long time. Norman Garmezy was a psychologist who did risk assessments and looked at the ways that people deal with resilience and really looked at resilience as a manifest competence despite exposure to significant stressors.
I love that.
And there’s a lot of goodness with that because it is about kind of bouncing back, the ball bouncing back to where it was. The problem with that model as it is, purely, is it doesn’t talk about us changing as human beings. And that’s where resilience, where that definition is now moving forward, I hope, in the way that I kind of look at as well. Thinking of resilience, not just as a way to bounce back, but a way to grow and develop through adversity.
And the only way forward is to become new and to accept who we are becoming.
And it’s often why I use the image of the penguin. It’s actually on the cover of the book. And it’s not just because penguins have a lot more male penguins doing some of the work, and I was a stay-at-home dad, so there is that connection. But it is because penguins are this image of resilience. And the fun thing about penguins that I often share with parents is that they are birds who have learned to adapt to the coldest place on the planet and they have to learned to fly under water. And for those of us who parent, we can still fly but it’s going to look completely different.
We have to adapt and we have to learn to fly in a place that we even maybe never even considered before. And when we think of resilience in this way, that we are becoming, that who we are inside can grow despite this exposure to all these stressors. Then it becomes this whole new way of being. And if we can get into that kind of maybe more positive space, then it doesn’t feel like our life is being destroyed by our family and all the dynamics that are coming. We begin to kind of go, oh — these are things that are helping me to kind of fly underwater. To change and to be in a new environment. But that takes accepting and accepting our losses genuinely and that’s a totally different way of being.
That’s such a powerful way of reframing that. And that idea of, I love the visual of the penguin — first of all. I had not heard that before, so that’s just a really wonderful way of visualizing that. But I think what is so especially lovely of the way you described that understanding of resilience is, for most parents who have a child with special needs or significant challenges, this is not a blip on the radar of their life, right? It’s not like having a child who maybe has a period of time where they have an illness or something, where you go through a relatively short period of adversity and life sort of goes back to what you expected it to be. When you’re parenting a kid with special needs, this is what life is, right?
This is how life is going to be and yes, kids can and do and improve and all of that, but it really is coming to a new understanding of — life is not going to be the way we thought it was going to be when we first envisioned having kids or being parents. This is a whole new way of thinking about it and how we can grow into that and grow through that because it’s not going to stop. Our kids are not going to wake up one day and not have these challenges, these special needs, whatever. So I love that perspective on the longer term, this is what life is, this is the new normal of our lives, and how do we really embrace that and grow through that.
And you can’t just snap your fingers and make it happen. And I think so often, at least in the beginning of this journey for many of us, it’s all about the fix. Fix the kid and then I will be able to go back to my life as it was before. I will be able to kind of return to normalcy, but there’s a new normal and that’s why in the book, I spend such a long time, relative to the other pieces, helping people to process their grief. And I think this is where ‘The Resilient Parent’ has maybe a unique place on the bookshelf. For people, we rarely talk about the fact, or acknowledge, that as parents — we have real grief.
That’s not to say that we don’t love our child or think that they’re awesome and that we help their self-esteem — that’s true, but at the same time if we don’t process the grief and accept the new waters we’re in, accept that loss, we just find ourselves like the penguin on land. Just out of sorts and never really able to fully function.
So in the book, we talk about looking at the stages of grief. And since writing the book, I have kind of shifted that to looking at the tasks of mourning, this comes from another researcher on grief, William Worden. And he talks about grief as being four tasks, and they’re not necessarily in any particular order, but the four tasks he talks about are: Accepting the reality of the loss, and so that’s a piece. Processing the pain of the grief is another task. Adjusting to the world without that person, in this case, we’re not talking about someone dying in our context, but it has a similar feel. And then, maintaining a connection.
That first piece — Accepting the reality of the loss, for many of us, especially if we have kids with invisible needs, it’s really hard to accept the reality of the loss. Because nobody else around us is accepting it. People are just treating the kids in our family as if everything is just normal. And it is, and it isn’t at the same time. And when we can accept the fact that what we were hoping for as parents, what we were always dreaming about family life would be, when we can get to the point where we can say, “You know what? What I thought this was going to be, this is nothing like that.” And when we can accept that, there is a kind of freedom for us to begin to kind of rewrite our story.
And when we rewrite our story, then it feels like new possibilities can begin to exist. And I think a practical way of acknowledging that loss, if we’re talking real pragmatic. When you’re in the midst of it, I would say is to write it down. Write down — these are the things that I thought it would be. And it could just take 5 minutes. Even just keywords written down. These are the things that I thought it would be. And then in the other column — these are the things that it actually is. And just that simple 5 minutes of accepting that, and giving yourself even 5 minutes a day for a while, if it’s really a painful part of your existence to say, yeah. I have lost this, we have lost this for each other. And then the amazing thing is, out of that, for many people, that acceptance is actually a freedom to begin to think differently. And that’s where the accommodations, that’s where the crazy fun ideas that a family can come up with, that’s when things start cooking, and a family starts to kind of integrate and kind of come back together, and it’s a joy to watch that happen. But we just can’t shortcut it — for most people. We really have to say, “I have lost something.” And then we can move on. It makes such a difference.
I completely agree. It’s so powerful and I think even just people, parents feeling like they have permission to acknowledge and think about the fact that they have lost some things, that it’s okay to grieve this. I have so many parents when we sort of touch on this who really put a barrier up to it because it feels negative, it feels bad — like I am not supposed to have bad feelings or I am supposed to be positive, or if I allowed myself to acknowledge that I feel a sense of loss in something, then that’s somehow a bad thing for a parent to do, and it’s actually totally the opposite, and I love that really what you’re doing is giving parents permission to acknowledge exactly how they’re feeling that we’re so often afraid to express, even to ourselves.
Yeah, because we think we’re going to get lost in this world of depression and negativity. And there is a subtle difference between kind of complaining and accepting reality. In complaining and in whining — I actually have a whole section of the book — it is okay if it is done with the right community of people. But for the most part, it’s not going to help us out. This is different. This is kind of acknowledging what is really before us and acknowledging what we expected things to be, what we were forecasting things to be. And when we do that, when we acknowledge that, it gives us a way to recast our reality. And I have seen families and people have given me feedback from the book that this was kind of the most important thing for them. As you were saying, just to have the freedom, without any negativity towards their child, to have the freedom to say, “I have lost something.” And that often leads to real resilience, not just bounce me back to where it was. Because going back to where we were for most of us is just not going to exist because this is a process. And even if we get it down with one stage of development, guess what? Our kids are growing all the time.
That’s right. We were talking about that before the interview started about, okay — now I am in the phase of teenagerness with my kids, we were talking about just how every stage with our kids has its joys and it’s challenges and here we are, and we just keep moving with it, because they do. They just keep growing and changing and we’ve just got to keep up.
Oh my goodness, the preteen! We’re starting the preteen and I was like, “Noooooo! I thought I was starting to have it down! I had the rhythms, I had the interventions, and everything changed, overnight!” And the drama and the chaos — and again, having to revisit those feelings of loss again! Almost at every stage. Like, “Oh I thought this was going to be different, this stage or we would be further along than we are on certain areas, than we are now.” And again, just kind of accepting.
And I find that accepting that grief, is a way for me to actually accept my daughter. She really is…. and unconditional love is possible when I just accept where we actually are, and I don’t worry so much about the future and all the problems that are going to come later on. Being in the now just is so important and is also another part of what we talk about on ‘The Resilient Parent’. This piece of mindfulness, being in the now is so much easier to say than to actually do.
Because we sit there, at least I do. I sit there and I just say, “If we don’t fix this, how is she going to drive a car? And how is she going to have a boyfriend some day? How is she going to leave the house? Will she ever leave the house!” And all these…
Will she ever leave the house! Right! And that really gets you spinning, right? And you start to think beyond 18, man — that can take us to a really not good place.
And there may be some people who are listening right now who are in that place, and they are thinking about the next stages, what happens when I am no longer around, when I am incapacitated. And it kind of moves on and one. And really, the only way that we can find some peace in it is to lean on some of these resources of figuring out how to be present to the moment. I remember as a chaplain how important it was, they would teach us to be in the room. Don’t be in the next room. Don’t be where you just were. Be with the people who are in that hospital room or who are in that emergency department and just be with them in that moment.
I remember being with a family who had literally survived their house being hit by a tornado. And it would have been very tempting to ask them all these questions about being in the tornado and how crazy that was. And yet that wasn’t really where they were. They were with their loss and the things that they had lost in that moment in the hospital room. And in the same way, I think as parents, part of the challenge is to be in the now. Even when the storm is out there and there are all these things going on and it feels like everything is swirling, right now, we need to be in the room and present with what is happening in that stage, in that moment with our child. Because that is where real empathy starts. And real mindfulness is just about a doorway to that empathy so that the storm outside doesn’t overwhelm the conversation.
Yeah — because the storm is going to be there and that’s the thing. Whether your child has special needs or not, there is a certain number of storms and a certain amount of uncertainties that comes with parenting and it’s going to be there. So to learn how to be in the midst of that and not lose ourselves in that, but to be able to be present for that and be present to ourselves and to our child is huge.
I am curious what you have found or maybe what you can share with people, because I think that’s a hard thing to do. I think people can understand the benefit of that, and I often talk with parents on a practical. Level about the importance of keeping themselves calm and trying to steady themselves in the midst of whatever chaos or challenge might be going on with their child. It’s a tough thing to do, and I think different things work for different people. Their certainly isn’t a one size fits all strategy, but I’m curious — for you, have you found something or some things that you have found particularly helpful to stay more calm or present in those moment or maybe things that other parents have shared with you that have been helpful for them?
I’ll share 2 really practical things. And it’s not to oversimplify something. What you are talking about is a level of being able to co-regulate — to be able to regulate yourself so that you can also regulate your child, is so layered and we can write books and books about it, but just a couple of things. So in the book, one of the things I talk about is, having something that’s symbolic to you in your pocket or in your purse that helps to ground you back — for some people that may be very literally like prayer beads or a cross or something like that. For me, for a while, it was a penguin that my sister had given me. It was a penguin that looked like it was shattered and had been put back together. And after the story of the penguin, you can see why that was meaningful to me. And so, I wouldn’t even have to take it out of my pocket, but I could just feel that it was there. I could put my hand in and I could feel that the penguin was there.
And so having something like that, where you have a ritual practice, depending on people’s spiritual backgrounds. I know that in my particular background as a Christian, and I also know, for those who are Jewish as well as those who are Islamic — we share these scriptures, where people tie the scriptures on their head, I don’t think that that’s necessarily literal — but this idea that you have something with you that grounds you back on your person. So this is really practical thing that people can do right now.
And at first, it may not do much. But when the cortisol starts rushing through somebody, when you feel the anger starting to go and you start to kind of feel like your amygdala is going crazy, because your kid’s amygdala is going crazy, you can just reach down in your pocket or your purse and just say — this reminds me of where I am going to be. Especially if, while you had your coffee or whatever, you touched that item — it’ll bring you back to that quiet space, even if you don’t have time right in the moment. So that’s one practical thing.
Another practical thing that people can think about — we often forget about our physical selves. We think of our physical selves as being separate from our head experience, but especially people who experience yoga for instance and this kind of comes from people who are Hindu as well and many other beliefs and backgrounds and cultures around the world, practice this idea that through our body, we can connect with our mind and our spirit.
And so one really simple thing is to concentrate on our tongue and our eyes. Two centers. Now of course, everyone knows that they should take deep breaths — I think most of us have heard this. So that’s the first and central thing, but also if we think about our eyes as we are talking to our children and to our partner or our spouse, whoever it is that we are engaged with, are our eyes soft. Do I have soft eyes, are the muscles around my eyes relaxed? And if they are, if I concentrate on that for a second, almost always immediately our heart rate will slow down, and we will begin to actually be less in fight or flight and ready to engage. So that’s a really simple thing we can do, soft eyes, kind of comes from these yogis, this idea of this.
The other piece to this is the back of the tongue. A lot of us hold tension and we don’t realize it subconsciously, like gritting our teeth or tightening everything in the back of our tongue. So if we concentrate on first releasing the back of our tongue and also releasing our jaw and in including that as we’re breathing. So we have these soft eyes, and now I am kind of releasing the tongue, that does 2 things.
It changes the physical response, it takes us a little bit out of fight or flight, and also just the mindful aspect of thinking about our body in the moment, it removes from us the ability to forecast and to think of the future. It removes our ability to think of the past because we have to physically concentrate on a part of the body that we are not used to concentrating on — and like magic, it just pulls us back to the present moment. And it takes some of that distorted thinking immediately away. And as parents, distorted thinking is our bear trap and it holds us and it just bites in and we just can’t let it go.
Such helpful, practical strategies because I think it’s easy to know that we should be mindful and calm and engaged in a certain way, and figuring out how to do that is a whole different thing and it takes practice. And I often will say to parents, if you are aiming for perfection with how you are engaging with and parenting your kid, that’s a recipe for depression and anxiety right there. You’re never going to come close, no parent does! If you think about baseball, a spectacular batting average for a season is like 300, right? If they hit the ball 3 out of 10 times. I kind of think about that for parents too. If we’re getting it right or we are able to stay mindful or present in the moment or handle something in a more ideal way 3 out of 10 times, we’re probably doing pretty well.
And hearing you say that is grace for me. It just feels so good to be reminded as a parent, because I need that reminder. We can get so down on ourselves. I know I can get down on myself, and just realizing that we’re really just trying to raise our batting average, I think is a great message. And having grace for ourselves in the process — there’s so much guilt, so much guilt and we all experience, this — I know I do. And when we’re sitting in the coffeeshops with these parents, I can not tell you how often the caffeine went down our throats with a ton of guilt. And what we were talking about is always, oh I wish I could do this. Oh, I wish I could figure this out. We’re always looking for this buried treasure to fix everything. And you know, it’s just not there. And we need to unbury the guilt and lay it out. Let it breathe and let it go away and be who we are.
So powerful. So many great things in here, I know that this is so helpful to the people listening. And we can talk for hours about this and I am already thinking we are going to have to do a follow up interview to this one because there are so many more things I want to ask you and talk about, so we’ll definitely work on scheduling that, but I want to, before we wrap up for the day — I want to make sure that people know where they can find your book, where they can connect with you further because I am sure people are going to want to follow what you do and also for sure get a copy of the book, so how’s the best way for them to do that?
There are lots of different ways that people can connect. They can go to ‘The Resilient Parent’ on Tumblr, also on Facebook we have quite a few families that are connected through Facebook, so if you can look up ‘The Resilient Parent’ and connect there, we’d love to have you be a part of that. The book is available almost anywhere where books are sold. I always encourage people to look for their independent bookstores. You can go through there and of course you can go through Amazon or any of these larger book sellers and find the book there as well. DRT Press, you can also go — there’s a number of resources, my book is part of that publication group. And if you go to DRT press, kind of look that up — you can also order directly from the publisher as well.
Awesome. And I said this at the start of the interview, but just to reiterate for people, that this book is one of a handful here at my clinic that we recommend most often to parents and that we go back to again and again and use so often in our work with parents. So I really would encourage all of you listening to check the book out, get a copy of it, use it and it’s just one of those really practical guides that you’ll find helpful. So, Mantu, thank you so much for being with us today. I know that this was incredibly helpful to everyone listening and I appreciate your time. Thanks for being here.
It was my absolute pleasure, thank you Dr. Nicole.
We’ll see everybody next time for our next episode of ‘The Better Behavior Show’.