Grief as the Sibling of a Child with Special Needs {EP 188}

Robyn: So far in our sibling series, we have talked about how to help siblings of kids with big, baffling behaviors understand parenting that feels unfair to them. And then last week, we talked about how to teach all the kids in our house, but we talked specifically about siblings. How to teach kids about the Owl, Watchdog, and Possum brain, how to teach kids about their brain, about their nervous system. How the brain and the nervous system connects to behaviors, and how some folks have some vulnerability in their nervous systems, or what I would say, have overactive Watchdog or Possum pathways. Because when we teach kids to understand the same things we are trying to understand, like what's underneath the behaviors, we bring coherence, we make sense of those behaviors, and that's good for all of the kids in your home.    

Robyn: Today, I'm going to talk about making sure your other kids, the siblings, if you're a kid with a big, baffling behavior, feel like you get it, like you get how hard this journey is for them. As well as- because these two things are related. We're also going to talk about the grief of being the sibling of a child with special needs in general, but specifically a behavior-based special need and these behaviors that emerge from what we would call an invisible disability. So let's first start with making sure the kids in your home, siblings of kids with vulnerable nervous systems and big baffling behaviors, making sure that those kids feel like you get how hard this is for them, right? And feel like you get it in the best way that you possibly can, because you actually really can't get it, the same way we can't truly ever get or understand anyone else's experience, right? So you can't completely get their experience, but you can show them in the best way that you can, that you get it in the best way that you can, that you get it, that you get that it's hard. You understand it, and you see how challenging and how hard this is for them. .And we come back to that truth frequently, right? Like this isn't one that we accomplish, and then check off our task list, right? Like we don't-- make sure our kids know how hard it is check that one off and never have to revisit it, I wish. But no, we can't do that, right? We kind of have to continually come back to, we know how hard this is, and I promise y'all, we can do this without, like, getting stuck in it, without drowning in it, right? Without feeling like, the hard, is the only thing we're thinking about, right? We can balance these things of acknowledging the hard without really getting stuck in it, but y'all, all of us, just get into, like, the monotony of regular, everyday life, right?    

Robyn: I mean, yes, you're caring for a child with really big, baffling behaviors, and it is probably taking up a lot of your focus, but at the same time, you're still just doing regular life. You still are paying the bills and cutting the grass and doing laundry and going to the grocery store, just like normal, regular everyday stuff, and when we get into that routine of daily life, and thank goodness we do, right? That routine is so important. But when we get into that routine of everyday life, it is easy to stop, kind of, quote-unquote, seeing how hard things are. I mean, we like habituate to it, right? And this is perfectly normal, but when we are with something kind of consistently, we stop noticing it, right? Like when we, you know, hear an obnoxious noise, right? Like at first, we really notice it, and even if it doesn't go away over time, we stop noticing it, right? We habituate to it. And the same thing, of course, happens in the daily struggles of parenting a kid with this vulnerability in their nervous system. This is normal, this is human, and in most ways, it's good, right? It wouldn't be great if we were just continually hyper focused on how hard everything is. And some of us find ourselves in that space where we're continually hyper focused on how hard everything is, and we actually have to teach our brains how to also notice and focus on other things.    

Robyn: When we've habituated to how hard everything is, it can unintentionally start to begin to swing towards minimizing it, or start to begin to swing toward, you know, this just is what it is. So get over it, whether those are like the messages we're kind of sending to ourself, or the messages we're sending to the other kids in our families, and so we do have to be occasionally deliberate, occasionally, about kind of giving our attention back to the reality that this is hard. In my work with families, I've seen a few common reasons that siblings start to feel really, really unseen, like that nobody gets their struggle. And frankly, all the number one reason is because they actually are really unseen, or we could say they actually are less seen than their siblings with special needs, or their siblings with big, baffling behaviors. Their needs- the siblings needs, like by definition, just aren't as big. Now, maybe you have multiple kids with very vulnerable nervous systems and very big, baffling behaviors. We're going to talk about that in an episode or two today. I'm talking about your other siblings, the siblings who don't have as much vulnerability in their nervous system and the siblings who are easy to assume are just kind of doing okay, right? The reality is is we really can't see them as much as we see our kids. I mean their needs again, by definition, simply art is big and it is okay to acknowledge that this is true.   

Robyn: It's okay because it's reality, and being in alignment with reality doesn't mean we like it. It doesn't mean we're like agreeing with it or saying it's okay. It doesn't mean we're not going to keep trying to change it. It means we are simply acknowledging what's real and honest and true. And for a lot of you, listening what's real and honest and true is that your other kids are less seen. They get less attention, because their needs are less big. And in addition to having smaller needs, and y'all by smaller, I mostly just mean your other kids that they need less co-regulation. They need less support from others, their needs are, of course, just as important, and just as valid. And when I use words like smaller, I don't mean to insinuate some kind of like validity, hierarchy or importance, that's not it at all. Just kind of, I guess, using some abbreviated language to communicate that you have kids who don't need as much co-regulation, they don't need as much support, right? And again, their needs are, of course, just as valid, right? We're not having a need contest by any means. But in addition to having smaller needs, it's common for siblings of kids with special needs to take on a role of having fewest needs, right? So there's kind of both happening. I mean, they really do not have as intense needs as your children with special needs, but then part of how they're coping is by reducing or minimizing the needs that they do have.    

Robyn: That then isn't about like their actual needs. That is a stress response. It could be a Watchdog brain stress response of perfectionism, of always having lots and lots of energy to quote-unquote, do things right, right? Or it could be a Possum pathway response, maybe a people pleasing response, kind of that dissociation from self, that can be a Possum response. Or it could just be like a La La Land or a shutdown Possum response, right? And Possum stress responses do usually fly under the radar, and even in some circumstances, like especially at school, or when there's lots of other kids around, where we're really focused on, like obedience and compliance and those kinds of things. In some circumstances, the Possum stress response actually gets praised, and these kids are described as as, oh, they're so good I don't even know they're there. They don't- they don't give me any trouble at all, right? And for some of your kids, that description the oh, they don't give me any trouble at all, right, that's kind of a combination of the reality that they do have a more quote-unquote resilient stress response system, right? The stress reaction more closely matches the stressor. Whereas our kids with sensitized stress responses, right? They can have big, big, big stress responses to teeny, teeny, tiny little stressors, right?    

Robyn: So it's very possible, of course, that the siblings in your family, of your kids with vulnerable nervous systems, they really simply just have a wider window of tolerance, a more resilient stress response system, and so they do have, quote-unquote, fewer or smaller needs, like they just don't need as much co-regulation and support and in connection and deliberate attempts at creating felt safety, right? And also part of the behavior of having quote-unquote fewer needs might be a stress response, and it very likely is a portion of this is truly a stress response. It would be pretty difficult to be the sibling of a child with a severe behavior special need and not, at least at some point, have a stress response that impacts their behaviors themselves, right? Because it's stressful. It is stressful to be in your family.    

Robyn: Now, right now, in this moment, as we're talking about your other kids stress response and that it's stressful to be in your family, I want you to remember one very, very, very important thing, okay, before you get swept away and feeling guilty for your child's stress response and perhaps guilty for your inability to change their stress response. Remember that stress responses are protective. They make perfect sense. They're designed to help the person until they can return to safety. In the moment of a stress response, it is the safest and most adaptive thing they can do, whatever it is that they're doing. So if you have a child who's people pleasing or perfectionistic or kind of shutting down, we can grieve that truth, because it is hard to be kind of stuck in a chronic stress response, but also remember that their stress response is so brilliant, it's so brilliant, and it's not your fault, and it's not a great use of energy to be swept away in guilt and shame for it. We want to make sure that we aren't trying to take away someone's protective response if we aren't also trying to make their world safer, and sometimes we simply just can't do that, right? We can't do anything to make the life of the siblings in your home any different or any better. I mean, if you could, you would right? We're all doing the best we can. That includes you and the support that you're getting for your family and the support that you're getting for your child with a vulnerable nervous system. And sometimes we just can't change what's happening enough that it impacts our other children's stress response in a positive way.    

Robyn: So let's go back to the topic of validating and validating the siblings of kids with big, baffling behaviors. Because these kids, these siblings, they have all sorts of very, very complex feelings that really need to be seen and validated. They're often feeling stress or guilt or responsibility over the stress of that their parents are under, and they maybe are longing to have a normal family. Maybe they don't understand why things have to be so hard, and maybe they take pity on their sibling and they're like almost over-responsible for them. Or maybe they're angry or confused or resentful. They just want to go on a normal family vacation, or they just want to spend time with you. So ask yourself, in a very gentle way, full of self-compassion, when the last time was that you validated or acknowledged those feelings in them and y'all, it would be so normal if it's been a long time. I mean, life is just that. It's life, it's our normal. I mean, it's probably true that at times, you have felt frustrated by your kids who have more resilient nervous systems, like you've been like, oh my gosh, can't you just deal with this better? Or can't you just get along, or can't you just let it go right? Like we have high expectations for our kids who have a little bit more resilience in their nervous system. Now, of course, not all of you have those feelings, and not all of you have them all the time, of course, but, but y'all that is actually really my whole point that the feelings of everyone in your family, including you, are varied, and they are all valid. Our culture does not do a good job letting people have two conflicting feelings at once. We've talked about this a lot on the podcast. I talk about it a lot in raising kids with big, baffling behaviors. We've talked about this in the grief podcast, which is episode 129.   

Robyn: It's hard for grown-ups to feel grief for having a child with a vulnerable nervous system. Like we feel guilty. We feel like maybe the grief means we don't love this kid or the grief means that we're a bad parent who doesn't appreciate being able to be a parent or or whatever. We we make meaning and judgments out of very human, very valid feelings, but, but y'all, having grief around having a child with a special need. It doesn't make us any of those things. It doesn't make us bad. It doesn't mean we don't love our kids, and we need to make sure our other kids know this too, that they can be mad and have grief and they are not bad kids. They are not bad siblings. They are totally normal kids having a very normal reaction. So look for opportunities to say things like that makes sense, or I get it, or, of course, you feel mad, or even I feel that way too. Families, y'all. Relationships are complicated. If I've learned nothing else in this life, as I get older, I realize that this is really just a universal truth, families and relationships are complicated, and some are much more complicated than others. Loving someone who has a nervous system disability with behavior-based symptoms. That's a mouthful. A nervous system disability with behavior-based symptoms, right? Loving that person is so complicated we have to untangle all our own beliefs about behavior and ableism and even just what it means to be human. And then we have to do this all while not receiving the support that we need. And in fact, for many of you, sometimes you're getting the exact opposite. And then we still have to live regular life where the grass grows and you need groceries and clean underwear. So it makes so much sense that we'd grieve. This isn't what you'd expected, and it's not what your other children want or expected either.    

Here are four questions to ask yourself when supporting your child through grief in your family, how do all of your children know that; number one, it is okay to talk about feelings? Number two, it's okay to talk about hard feelings or uncomfortable feelings? Number three, it's okay to talk about grief? And number four, it's okay to talk about grief that's specific to being in a family with a child with a vulnerable nervous system and big, baffling behaviors? So when I'm working with families and we're looking at creating a culture in your family in which your kids feel as though grief is an emotion that they can tolerate, touching, tolerate being with, those are the things I'm looking for. What's your family do with feelings? What's your family do with quote-unquote, hard feelings? What's your family do with grief, specifically? And do your kids know that it is okay to have grief about being in a family with a child with a vulnerable nervous system and big, baffling behaviors?    

Robyn: Now people ask me all the time, okay, great, but what does it look like to grieve, and how do I do it? And I've asked myself and my dear, sweet therapist, that same question, right? I have like, shouted at her, like, fine, fine, fine. You want me to grieve. Okay? I get it. Tell me how to do that, and I will just tell me, right? And she just kind of smiles at me, you know, lovingly and compassionately. And I really do want a road map, and I really do want her to tell me exactly what to do, and she really can't. It is really not something to quote-unquote, do, right? It rarely is grief this, like big, bombastic, one time event, you know, like a flood of tears and yelling, right? It makes me think of, you know, Sally Field in Steel Magnolias. I mean, grief happens in tiny moments. Grief happens when you realize just how awful this is, how much sadness you have, how much helplessness you feel, and you just feel it just for a moment. We can't control anybody else's experience with grief, but we can make it clear that grief is safe, grief is welcome, grief makes sense, and grief can be survived. So in your family, talk about feelings. Have a wide variety of feelings in your family that you talk about. I mean, your family does have a wide variety of feelings, like, that's being human, so talk about it, right?    

Robyn: Oh my gosh, a new Inside Out movie has just come out, and I haven't seen it yet, but it's there and available for you to get some ideas of a how to bring talks about feelings into your family, not to mention the first one, right, that came out. Gosh, can you believe nine years ago? Right? Read books about family, about- I'm sorry, read books about feelings, right? Even if you have big kids, you know, read books about-- characters in books have feelings. So if you have teenagers, you. Maybe read what they're reading, and then talk about those characters feelings. And if you have younger kids, read books literally about feelings. Talk about disabilities, talk about invisible disabilities, talk about ableism. Read books about disabilities and being the sibling of a child with a disability. It doesn't have to be books about vulnerable nervous systems or behavior-based disabilities, just getting our kids more comfortable and familiar with the talking about disabilities, with talking about differences in humans, and then use those books and those that literature as opportunities to kind of explore, like, what the message is in that book about that particular disability, what is our culture's approach to or, you know, way they connect with folks with that specific disability, how welcome in our culture are people with disabilities, right? Like, is it the person with a disability that's a problem, or is it the way that our culture isn't set up for those folks that's a problem?    

Robyn: Now, hopefully, you know how I would answer that question, but these are the kind of conversations to be having in your family. They don't all have to come back to talking specifically about your child, right? But if we have these big conversations kind of overall, and these are things that we're talking about and pondering and paying attention to in our family, they will eventually kind of relate those topics back to your family and their sibling specifically. Also in this moment, as you're listening to this podcast, like notice how it feels to acknowledge that you have a child with a special need, that you have a child with an invisible disability, with behavior-based symptoms, because that might be new for you that might be feeling really hard for you. Couple years ago, I had my dear friend, I mean, like my best friend, Marshall Lyles, on the podcast, and we talked about ableism and parenting, and specifically trauma-informed parenting, or parenting kids with these vulnerable nervous systems, right? And Marshall defined disability on that episode, he gave us his definition, and he said that for him, a disability is- or the definition of disability is the unnecessary experience of isolation and struggle resulting from an uninspired world's lack of empathic forethought. And he went on to offer the curiosity of, and he said, "Is there a part of you that the world has not thought to welcome, then that becomes a disability."   

Robyn: So I bet even with just those two quick quotes, you are feeling like you really want to go listen to that podcast episode. It was number 85, 'Ableism, Parenting, and Trauma Informed Care' with my special guest and closest friend, Marshall Lyles. The challenge with a nervous system disability, with brain based symptoms is that the behaviors have such a tremendous impact on relationship, and we have been conditioned to believe that those types of behaviors are personal. A behavior like vomiting, right? That's a symptom of something, a behavior like vomiting, it doesn't feel personal, even if you were puked on, I mean, it's gross, but it doesn't feel personal. We can see so clearly that that symptom, the vomit, is about what's happening in that other person's body, but our cultural beliefs about behavior make it so hard for us to see that the behavior is just about what's happening in the other person's body, and spending time thinking about these big topics truly, really will help not just you, but will help the siblings in your family. Will help them in this space of feeling really seen and known and understood and connecting with their very righteous and valid grief about being in a family with a child with a serious special need, a brain-based difference- behavior-based symptoms.    

Robyn: All right, I have kind of strayed from the topic just a little bit, so let me wrap this up. Don't be afraid to validate your child's heart and uncomfortable feelings. It's when feelings are welcomed that they can become integrated. When we validate our siblings, big, big, big feelings, even feelings as big as like I hate them. I wish they weren't in this family. When we validate those feelings, we are saying, I see you, your feelings must be so big, and I want to help you with them, and we create an opportunity for those feelings to get integrated. I have a lot of podcasts about validating feelings, and I have one particular about validating really hard feelings, like when kids say things like, I hate you or you hate me. And so that podcast isn't specifically about validating the siblings feelings when they say like they hate their sibling, but it thinks that the principles will apply. So go check out that podcast episode, it's episode 168. Also y'all be very, very, very deliberate about talking about grief, welcoming grief, right? Talk about these things in your family. And to do that, you must be in relationship with your own grief. I do have a podcast episode all about grief. I know it's what I mentioned a lot. It's episode 129.    

Robyn: This is a tough topic y'all, talking about siblings. I know you want to talk about it, but also it's hard. So thank you for being brave. Thanks for tuning in. Thanks for just continuing to do the hard, hard, hard work every day to support yourself and support these precious kids in your home to support the siblings of kids with vulnerable nervous systems, big, baffling behaviors. I know that this isn't your intention, nor is it what you care about, but you are doing something that is making major changes in the world, right? And that's not your job. That's not your responsibility, your job and responsibility is to just think about what's happening in your little family, right? And that's enough, and that's all you need to think about. But I think sometimes it's helpful to know that this thing that you're working so hard for, it's not only impacting you and your kid, but it's having impact on the culture of our world, and y'all, it matters, and boy, boy, oh, boy, do we ever really need it. All right, so come back next week. We'll keep talking about siblings, until then, bye, bye, y'all!