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Amy Julia Becker: 00:06
How can we help a child grieve when they may not have the words to tell us that they’re hurting? Today I’m joined by therapist Sissy Goff, author of Helping Kids Through Grief. We’re talking about how children with disabilities experience and express grief. I was really grateful for this conversation about the practical ways that parents and caregivers can show up for our kids in times of grief and loss. I’m Amy Julia Becker, and this is Take the Next Step, a podcast for families experiencing disability. We’re part of the Hope Heels Network, bringing you weekly encouragement and practical next steps to help your family thrive. We believe that your family matters, your child matters, and we need you among us. Today we’ll be learning practical ways parents and caregivers can help children express their emotions, set loving boundaries around difficult behaviors, use play and memory making to process loss, and move toward hope without leaving grief behind. Here’s my conversation with Sissy Goff. I am really delighted to be back here with my friend and friend to this podcast, Sissy Goff. Sissy, thank you again for being here with us.
Sissy Goff: 01:20
Amy Julia, I’m so delighted every single time. I just am so grateful for the work you’re doing, that anything I can do to join you makes me so happy.
Amy Julia Becker: 01:28
Well, it is a mutual um delight, and I’m grateful. And I’m really grateful. Um, we’ve talked to you about delight here on the podcast before. That’s not what we’re doing today. We’re actually talking about how how to help parents and caregivers when their kids are grieving, how to navigate grief, because you have just come out with another new book called Helping Kids Through Grief. And I have just read it and was so struck by um just it’s gentle and wise and gracious and would be helpful to any of us in our families, whether our kids are experiencing disability or not. But I do want to hone in on parents and caregivers of kids with disabilities. And I’m thinking especially of kids with intellectual disabilities and what it looks like to guide them through grief. Um but I thought we should probably start by just uh asking for some like definitions. So what is grief and when might kids of all ages experience it?
Sissy Goff: 02:22
Well, grief, I I don’t actually know the official definition, but I would define it as a reaction to any kind of loss in our life, the emotional reaction. And and I think, you know, it’s so important to talk about with intellectual disabilities because grief, I talk a lot in the book how about how it’s a reaction to love. And they love deeply. I mean, all of us love deeply. And so we don’t have to have the words to express that, to experience the loss of a person, a place, any kind of experience that causes us to feel lost, to grieve, to mourn is gonna fall into that category. And so I’m so grateful that we’re talking about it because I don’t think we talk about it enough. And even when I went to do the research on it, there’s not enough out there in terms of helpful books for kids to help us know how to help them best.
Amy Julia Becker: 03:17
Yeah. Yeah. I’m I want to get at parents who I’ve talked to over the years who’ve had kids, adults and younger children with intellectual disabilities who’ve experienced significant loss and their parents have not known how to recognize grief, how to help them process grief. And that was especially true with um kids for whatever reason who weren’t able to express feelings in words, right? Yes. And so I’m curious if you could just give us some um indications, like nonverbal indications that someone might be grieving.
Sissy Goff: 03:46
Yes, there are so many. And I think we want to pay attention to what’s happening physically. Are there changes in their body, changes in their eating habits, upset stomachs, changes in their sleep, obviously any kind of physical health changes can be a result of that. I mean, the work around the body keeps the score is certainly true. We store emotions in our body, especially when we can’t express them. So I would want to pay close attention to that. I would also want to pay close attention to bigger emotions. Is there more anger? Is there more, are there more unexplained tears? Is there more anxiety, agitation? I mean, you know your child and you know the signs that something is not right inside of them. And I think we’ve got to pay attention and realize that that it very well may be grief. And if they don’t have the words to put to it, young children certainly don’t, and they grieve. And so we want to watch closely for any of those things. And and I think clinginess can be part of it, regression, because all kids can regress in times of grief, which we can circle back to. But I think any of those things would be really important indicators that there’s more happening underneath the surface that we want to attune to. And I think we can do things like even pull out a feelings chart for kids who aren’t verbal that could point to a face that could that could help them express more of what’s going on.
Amy Julia Becker: 05:12
Totally. I love that idea. Um I was struck in the book where you wrote regression is a temporary return to a less complicated time. Could you just say a little more about that? Because one of the things that came up in the book, you’re talking about different developmental stages. And I was looking at um some of the things that show up in multiple developmental stages when it comes to grief and bigger emotions and behaviors, which we might talk about a little bit more too. But you also wrote down regression. And so again, for a parent who’s like, wait, what does that mean? Like, what does regression actually mean? And um, and why is it happening? Again, that idea of a temporary return to a less complicated time. I thought that was a very kind way of putting it.
Sissy Goff: 05:52
Well, it certainly is what kids experience. And and I think it’s that sense of, I don’t want to be here in the midst of this. I’m feel totally out of control. And so I’m gonna go back to a time that things felt safer and easier and less complicated. And so, and it’s not a conscious decision. It’s just something that happens for so many kids. And so I will talk with a lot of parents who have older kids who all of a sudden are baby talking, sucking their thumbs, acting out more like they used to when they were younger, just going back developmentally to behaviors that might really surprise us. And honestly, I think sometimes irritate us, which can make it more complicated because it doesn’t, I mean, tears often are going to elicit more compassion from us, but there’s a lot of behavior and grief that are not as kind and easy to respond to as tears.
Amy Julia Becker: 06:46
Oh, that’s such a good point. And maybe that that may leads us to a good place to talk about the stages of grief and what those look like or might look like and how to understand those because I think that’s something that gets like a phrase that gets tossed around, but we don’t necessarily mean know what it means, especially when it comes to um looking at our kids.
Sissy Goff: 07:06
Yeah, exactly. And I love that Elizabeth Kubler-Ross is who created the initial stages of grief. I don’t even think about them as much as stages because I think for kids, you know, that almost sounds like you’re climbing up these stairs and you get to the top and you’re done. And that is for any of us who’ve walked through any kind of grief, that’s not how it works. It’s more cyclical. We move in, we move out, we come back. And for kids developmentally, it’s gonna impact them at different ages as the understanding of the loss settles in in different ways because of what they can comprehend cognitively. And that’s kids who are verbal or not. And so we wanna be aware of that. But denial is the first, which for kids, I think that’s a lot of where regression can happen. It is this return to a time things felt safer or a place where things felt safer. So I’m not even gonna acknowledge that it’s happening. And younger kids certainly can move in and out of even the understanding that it has in the midst of that. And so it looks really different for kids. All the stages can look different for kids, but denial, anger, and that is gonna be a complicated piece of it because we go through that. We have healthy, appropriate, hopefully, ways that we express that anger. Kids don’t know to do that. And so it’s gonna spill out all over us. And again, if they don’t have words, if they don’t have even higher level, more complex language to describe that, I think the anger can become bigger because it kind of stays inside of them. So denial, anger, bargaining. I’m gonna try and figure out how I can work out that maybe this never happened or developmentally based on where they are, a lot of kids really believe that they’re the center of the universe subconsciously. And so there is this sense of maybe I caused it, maybe there’s something I can do to fix it. And and I think we want to pay attention to where kids are with intellectual disabilities for that too, because they can stay there longer of that sense of I’m the center of the universe. And again, that’s nothing they would consciously ever say. It’s just a developmental place that kids move through. Then sadness. So the bargaining is through, and there’s this kind of relenting into the overwhelm of emotion, which can look really different with a lot of different kids. And then what has historically been called acceptance, again, I don’t know that that’s real, I don’t love that word because it’s not like we feel like we’re fine. I think it’s more the loss becomes assimilated into who we are and we’re changed by it. But I love that David Kessler, who’s a grief expert and who worked with Elizabeth Kubler-Ross, added another stage, which is meaning. Which is, I feel like everything that you talk about and you’re moving toward in your work. But I love that there’s this sense of we’re moving towards not only making sense of it, but how that loss, once it’s assimilated into our stories, how we can have a sense of purpose in helping others and how healing that sense of meaning is. That is something I’ve experienced over and over in my own life and in my own grief and loss.
Amy Julia Becker: 10:25
Yeah. And for a parent who’s kind of aware that a kid might be experiencing any or all of these things and not necessarily even in the order that you just offered. I’m wondering if there are ways to be kind of prompting interaction or conversations, like checking in on our kids. Again, we can be paying attention and if we’re noticing those big behaviors or we’re noticing regression, like there might be some kind of telltale things, but at the same time, there might be a loss. And you wrote about this even with your own life. Like, and sometimes you’re like, we there was a big loss and you don’t seem to be affected by it. So I’m just curious if there are things as parents we can do to kind of check in on where our kids are, especially if they’re not behaving or reacting the way we expect.
Sissy Goff: 11:07
Yes. And different kids are going to process it in different seasons and move through the stages differently. And one of the experiences with that is I can’t remember if we’ve ever talked about it on the podcast, that David and I were really involved in the covenant shooting in Nashville. And one of the questions immediately was, my child’s not talking at all about this. And we had kids who for months, I mean, very long stretches, did not want to talk about it. And some of that is based on how much they have processed emotions up to this point, how much they want to, I mean, their personalities and how much they want to process emotions. And again, their level of verbal expression is not, I mean, it’s tied to sometimes their personality and sometimes it’s not. And so there are kids who don’t say a lot that still don’t really want to feel the big emotions in the daily life. And so I think with those kids, I would say to parents, I want you to keep circling back. I love that phrase. And I think a feelings chart can be really helpful where we’re just all going through a feelings chart and pointing to something at the dinner table, if that’s possible. We are having them draw. If they can draw, we’re having them point to a color. And I love asking kids what color they’re feeling on a certain day, because I think even some kids who don’t understand what’s going on emotionally inside of them can say blue or black or green. And so coming up with other ways to give them opportunities to help them express their emotions, I think can be really helpful. But I would say regularly coming back to them, not with a lot of intensity, because I think sometimes that intensity can make them say, you know, shut down. I don’t want an interrogation. But I think just touch points of checking in and pulling back and checking and pulling back, and things like just patting on them regularly, walking by and giving them a hug. I mean, just reminding them that we’re close. And so if there are times they need to be a little closer themselves, they know we’re connected, we’re available, we’re aware, and we can express that awareness through a lot of different means.
Amy Julia Becker: 13:26
I love that. That’s beautiful. And I’m curious, I wanted um to ask you because you write about play in the book as another way to interact with kids that they kind of need. Could you just speak to that a little bit? Um, because I didn’t I didn’t know that before I read what you had to say about it.
Sissy Goff: 13:40
Yes. So for young children, play therapy is one of the most significant modalities of play. But I think kids of all ages, and again, kids who have a harder time expressing themselves through words, I think of any age, play can be a really rich way because the concept behind it is that play is the language of kids. And so they’re gonna express what they can’t verbally through play. And even post-covenant shooting, there were so many parents who would say, we’re seeing cops and robbers show up through play. We’re seeing kind of some violence that’s coming out through play. And of course, because these kids had witnessed things that were horrific and they don’t know how to express that. And so it is a really helpful thing to sit with kids and observe their play, see what themes come out in their play, and then we can engage them differently. My parents, when I was a young child, built this really beautiful, elaborate dollhouse for me that I got for one of my birthdays. And it has sat in my office forever. And I have all these little dolls. They have been divorced 15 times, they’ve gotten in so many arguments, the dog has been run over. You know, it’s like these kids have acted out these experiences. And I could say things to kids through those dolls that sometimes they might hear differently, experience differently. Your mom and dad still love you. And so we can engage with them and play, and they can, it might land on them differently than it would when we tell them really directly.
Amy Julia Becker: 15:17
Yeah, I found that really helpful. Um, and I’m thinking though, also about when kids are potentially having um bigger behaviors, when they might be playing and violence comes in, when um there’s a sense of just like, oh, I understand that this extreme action, whether that’s impulsive action or angry action or whatever, um, I guess what I’m wondering about is how to have empathy for our kids and recognize that and be there for them, but also continue to set limits that they need, um, but also that we need on their behavior. Like you have any uh just advice for how to how to yeah, show up for them in love that gives them both like a place to express whatever the bad feelings they’re having, like, oh, and also to kind of contain that in a way that doesn’t cause harm to them or to others.
Sissy Goff: 16:09
I love that you’re asking that question because I think it’s a really important idea for a couple of reasons. One is I think any of us need a lot of grace when we’re going through grief. I mean, we all have a lot of big emotions, and I think it’s so easy. I mean, I lost my mom six years ago. And I mean, I’ve been counseling for over 30 years, and I so often felt like, are my emotions too big? Is this too much sadness? Is this too much anger? I mean, I I just there was a lot for a long, longer time than I would have expected. And so I remember thinking grief just seems to have its way with us. And so for kids who don’t understand, of course it’s gonna be this way. And there’s gonna be so much sadness, so much anger, all of those things. And I think we want to give them a lot of grace. We want to communicate, hey, all feelings are normal. There’s nothing wrong with the way you’re feeling. Of course, you feel frustrated, of course you feel angry, of course you feel sad. I mean, that just needs to be layered into everything we’re saying to them. And all emotions are welcome, but all behavior is not. And so, of course, you can feel angry. I know it’s been a really hard day. You still don’t get to hate your sister. You still still don’t get to scream at me and call me stupid. Because I think sometimes we feel so sad for the kids that we love that we end up coddling them and not only accepting all emotions, but accepting all behavior. And then I have seen play out multiple times with kids who have lost someone, whose parents have divorced, who’ve gone through chronic illness. I mean, a lot of different things that they where their parents, I think honestly just feel sad for them. And so they accept a lot more behavior than is appropriate. And those kids end up with what end up with what I would consider emotional entitlement. Where then everybody else should be okay with this behavior from me.
Amy Julia Becker: 18:18
Yep.
Sissy Goff: 18:19
And that becomes complicated and it’s not helpful for them.
Amy Julia Becker: 18:22
Yeah, that’s really helpful. Um well I’m thinking about how, okay, so we can’t shield our kids from loss or from the hard and complicated emotions that come from the loss. And we have talked about a lot of what we can do to help them move through those emotions and find some stability, even, I think, in a world that feels messy and chaotic. But I’m wondering as we start to kind of come to a close here, whether there’s anything that we can do that’s proactive uh to help our kids experience hope without putting grief like in the rearview mirror, you’re not allowed to do that, right? Like help them move forward without saying it’s bad to be thinking about the past, you know? Yes.
Sissy Goff: 19:03
I one of the things I loved getting to talk about was remembering together. And I think circling back to thinking about kids with intellectual disabilities, I think it could be easy to think that they don’t need that because they’re not necessarily asking for it. And the amount of kids who could say it out loud that say to me, I mean, I remember one girl specifically saying, I want to come in and see you because I feel like I’m forgetting my brother and I want you to help me remember. And so one of my favorite things to do with kids is create a memory box or a memory album. And it’s where we can hold both things. We can remember together, we can talk about the sorrow, we can talk about the experiences we’ve had. And even if your child can’t help you put it together, you could create this for them because we can show it to them, we can read it to them. And if kids can contribute, I will have them draw pictures, I will have them write down their favorite memories, stories. I will have, if there was a loss of a parent, I will have the other parent write about their favorite characteristics, write about how they met that parent. I’ll have grandparents write best friends, aunts and uncles, stories. I’ll come up with prompts and have the child write letters and ask for these people to write things that they can keep forever. And again, I think even if kids can’t do that themselves, we could do that for them. I can picture a family flipping through an album and reading out loud, these are memories because for kids, for all of us, sadly, our memories fade with time. For kids, certainly that happens. And so we can build memories out for them that they can keep forever. And so I think that’s part of it, that there’s this sense of we’re gonna always remember. We’re always gonna talk about this family member. We’re gonna look back. I had this dear family that I knew that had two girls, and the oldest sister died in the funeral. A friend of mine named Carter Crenshaw did it, and he talked about how we still grieve as believers, but that our grief is always framed by hope. And that this family will be reunited in heaven. That he said, I want you to always remember there are two sisters and to talk about that with this family. And so I think pointing them toward remembering, but also pointing them to what we can have now that we’re still a family, even though we’re missing a family member and we’re gonna create good, fun, hopeful memories together. And we have this hope to look forward to too, that we’ll be reunited one day.
Amy Julia Becker: 21:49
I love the just again, honesty and these really like practical, kind of tangible ways to give our kids at any. Developmental stage at all sorts of ages, in all sorts of personalities, but just real ways to um acknowledge and move through grief. And, you know, always at the end of this podcast, I try to name some of the next steps that our guests have given us. So I’ll give you my list and you can um add if you want anything to it. So one was just the pulling out a feelings chart and having everyone say, Here’s where I am. And within that, that idea of like, what color do you feel today? Or, you know, doing drawing, like just a way to kind of um give kids various opportunities to whether it’s verbal or not, express how they’re feeling. I love that. Um keep circling back. Um the physical care, just like t checking in physically with a hug or a pat or um on the back, um, to do just to play together and see what’s happening. Again, a lot of this has to do with parents paying attention. Um, and I loved that you also the way you said that, communicate that all emotions are welcome, but all behavior is not. Um, that’s like something I wish that I had had written on my wall 20 years ago when I first started having kids. Um, and then what a beautiful um additional suggestion in terms of remembering together and creating a memory box and having, again, like a physical and kind of a contained way, but expansive way at the same time to do that work of remembering. Is there anything else you would add just for parents or caregivers who are listening and need kind of one next step when it comes to grief with their kids?
Sissy Goff: 23:31
The only thing I would add is that we just continue to do our work in front of them, that we talk about it, that we’re modeling healthy expression of grief and that it’s both things. I mean, I talk about this so much in the book that we want to be able to say, I’m sad, I’m having a hard day. Wonder if you might be too. And at the same time, reminding them that we’re gonna be okay in the midst of the loss because we don’t need them to feel like they have to rise up and take care of us. But they need to know that we’re struggling too, because it helps them feel like they’re okay when they do. And again, I think even kids who don’t know how to express themselves as well verbally can experience that. They, that sense of my mom’s sad, my dad’s sad, my caregiver is grieving too, helps them feel like it’s okay for me to be feeling this as well.
Amy Julia Becker: 24:26
Yeah. And I think that is obviously a whole other conversation we could have about the fact that in many of these situations, parents and caregivers are grieving right alongside their children. Whatever has happened has happened uh for the whole family. And um, I loved that you wrote a number of times that yeah, parents can let kids know they’re grieving without processing their feelings with their kids. Like to have some other trusted adults in your life who um are helping you walk through it just as you help your kids walk through it. So yeah. Well, again, Sissy, thank you for so much wisdom and grace for all of us. And um, I do recommend, you know, the actual book for any parent. Um, yeah, what is helping kids through grief um is the name of the book for anyone who’s listening, and it is well worth reading, but also just having as like a resource um for these times that we all will experience at some point. So again, thank you for giving us that.
Sissy Goff: 25:22
It’s so good to be with you.
Amy Julia Becker: 25:28
Thank you for listening. If this episode was helpful, we are always eager to have you share it with another parent or caregiver who might need to hear it. Take the next step is a resource from the Hope Heels Network, a collective of thought leaders offering honest and hopeful wisdom. Our desire is to help people flourish in the good and hard parts of their stories. To learn more about the work of Hope Heels, visit Hopeheels.com. I want to thank Jake Hansen for editing this episode and Amber Beery, my Director of Content, for producing the show. And thank you for being here. I hope you leave this time with encouragement to start with delight, connect a community, and take the next small step toward a good future for your family.
