My guest this week is Emily Holl, the Director of The Sibling Support Project, the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental and health concerns. Emily is a social worker, author, and trainer who has provided workshops and groups for siblings and families, presented extensively on sibling issues, and has conducted and published sibling research. A sibling, and board member of the national Sibling Leadership Network, Emily has written about her experiences in blogs, magazines, and books such as “Thicker than Water” and as co-editor of, “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities”. Emily earned a Bachelor of Arts from the University of Massachusetts, a Master of Fine Arts from Columbia University, and a Master of Social Work from Hunter College at the City University of New York.
In this episode, Emily and I discuss how to support siblings of children with disabilities. Emily encourages parents to connect with these siblings to create an open, supportive dialogue to help them navigate their experience and discuss their sibling’s disabilities with their peers without creating stigmas. Often siblings seek answers to questions that lead them to false understandings of the realities around their siblings’ disability. Can they catch the disability? Did they cause it themselves? Emily helps parents combat these falsehoods and provides them with countless resources to aid in the support of the family as a whole. To learn more about sibling support and Emily Holl click here.
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The Sibling Support Project
- The first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs
- Peer support groups and events for school-age brothers and sisters of kids with disabilities and health concerns
Common Sibling Concerns
- Siblings have a need for information that parents often conceal thinking they are protecting them
- It is important to remember that disability is not experienced by just one person in a family
- When kids don’t have accurate information they will fill in the blanks themselves
- Ex: Children think they can “catch” the disability
- Isolation is a big concern for siblings as they fear they might be left out of community or peer activities or even isolated from their parents
Where to learn more about Emily Holl …
Episode Intro … 00:00:30
The Sibling Support Project … 00:02:26
Common Sibling Concerns … 00:12:00
Isolation & Resentment … 00:21:15
Siblings Need Outlets … 00:24:50
Unique Opportunities For Siblings … 00:28:50
Parents Supporting Siblings … 00:35:00
Episode Wrap Up … 00:39:15
Dr. Nicole Beurkens:
Hi everybody, welcome to the show, I am Dr. Nicole, and on today’s episode, we’re talking about how to support the needs of siblings of people with disabilities. It’s a really important topic that’s often overlooked, but sibling relationships are critical, not only when kids are young, but as they grow into adulthood. The experiences of siblings need to be heard, honored and supported, and to help us consider how we can do that, I’ve invited Emily Holl from The Sibling Support Project on the show. Let me tell you a bit about Emily.
She is the Director of The Sibling Support Project, the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental and health concerns. Emily is a social worker, author, and trainer who has provided workshops and groups for siblings and families, presented extensively on sibling issues, and has conducted and published sibling research. A sibling, and board member of the national Sibling Leadership Network, Emily has written about her experiences in blogs, magazines and books such as “Thicker than Water.” She was a co-editor of “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities”. Emily, it’s so great to have you here. Welcome!
Thank you so much Dr. Nicole for having me, really excited to be here!
Dr. Nicole Beurkens:
It’s such an important topic, it’s one I’ve been wanting to cover for quite a while on the show. I’m glad we could sync up our schedules to do this, especially right now, we’re still in this whole pandemic phase, families are spending so much time together. We at our clinic are getting lots more questions about sibling dynamics and issues. I think as parents are spending more time with their kids and are more tuned into maybe what’s going on with their kids, some of the needs of the siblings of kids with disabilities, so I think the timing to talk about this is perfect. Let’s start out by having you share with people what is The Sibling Support Project, how did it start, what do you do?
Thank you! So The Sibling Support Project is the first national program dedicated entirely to supporting brothers and sisters of people with special developmental health and mental health concerns. We’re the first national program in the United States and we work to support millions and millions of brothers and sisters in three different ways: One is through our books and publications, which we are very proud of the fact that they are written for and by siblings of people with disabilities of all ages. We have books for kids, books for teens, books for adults. You mentioned a couple of them in that lovely intro, thank you for that.
We also facilitate online groups for brothers and sisters. So these are currently closed Facebook groups for siblings of different ages. We have SibTeen, which is our group for adolescent brothers and sisters, Sib20, which as you might guess, is for siblings in their twenties, and then we have SibNet, which is our largest and longest-standing group. It’s been around for just about as long as the internet has and all three groups are wonderfully warm, reflective, supportive communities where brothers and sisters can really connect with one another to share information, resources, and I think maybe most importantly, just validation and support, a big way that we support older siblings.
And then what we are probably best known for is that our founder and first director, Don Meyer, created Sibshops way back in the early 1980’s and Sibshops are really fun, pedal to the metal events where school age brothers and sisters can gather these days online and really meet other brothers and sisters of kids with disabilities, which is something that many brothers and sisters don’t have the opportunity to do.
A lot of siblings grow up now, we hear from our adults in our groups, “Oh gosh, I didn’t know a single other sibling growing up and it was such an isolating feeling.” So to be able to introduce these kids to each other at an early age is such a gift. They get together, they have a lot of fun, we play a lot of super fun goofy activities. And we also provide opportunities for kids to learn something about the disabilities that their brothers and sisters have, the services and supports they are receiving, and to talk about the ups and downs of what it’s like to have a sibling with a disability. So it’s really our goal behind Sibshops. The feedback that we get from not only the kids who participate in Sibshops, but their parents, has just been phenomenal to why I think Sibshops has been so successful. Now, we’re in just about every state across the US and in a handful of countries around the world that are supporting young brothers and sisters in this way.
Dr. Nicole Beurkens:
Yeah, it’s an amazing model. We’ve run a Sibshop at our clinic for years and years and years now, and really feel like it’s such a core component of meeting families. I find that the focus tends to be on the child or the person with the disability or with the diagnosis and then secondarily on parents or the adults in the family, but the other kids often get overlooked, and what’s so cool about the Sibshops is this is just for them. You can watch their eyes as they come in and realize, “Oh, wait, no. My sibling doesn’t get to come to this!” In our clinic we’ve got a fun gym and all kinds of cool spaces that they know their siblings come for therapy and those kinds of things, and on Sibshop days, it’s like, “Oh, I get to come and do these things, this gets to be about me for today,” and that has such value in it.
Absolutely. It’s very important to share that The Sibling Support Project, we’re a proud program of Kindering here in Washington State, right outside of Seattle where it was just smoky for a couple of weeks because of the fires up and down the West Coast, but luckily our beautiful fresh air has returned. And Kindering is one of Washington State’s largest early intervention providers. We offer Sibshops as well. It’s really so gratifying, not only to see the kiddos come in. Sometimes when they come in for the first time, they’re really sort of uncertain and they’re not sure of what’s going to happen.
And then by the time we break for a snack, they’re best buddies, and by the end, they’re saying, “When can we come back?”, which is so gratifying. But also, the feedback that we get from parents. I’ll do info sessions with parents and you know, one mom recently said to me, “My daughter came home from Sibshop, and for the first time, she asked me about her brother’s disability.” That’s exactly what we want from Sibshops. We want Sibshops to be really valuable, meaningful experiences in and of themselves and also to be kind of a launching pad for conversations at home with parents.
Dr. Nicole Beurkens:
Yeah, because sometimes, as strange as it sounds, the disability or the child with the disability can become like the elephant in the room. It’s like everybody knows it’s there but it just doesn’t get talked about and it’s really important for these conversations to happen and I totally agree with what you’re saying, the Sibshops and the other resources and things can be really a nice springboard for families to have some of these conversations at all phases of life because the needs of siblings are different when they’re little versus when they get older. We’ll talk about that, but I’m curious about your connection specifically to the sibling issue and what drew you to be involved in this project?
Thank you for the opportunity to talk about my passion for this work, and really the reason why. I would say the most important thing that drew me to this work is my own sibling experience. Thank you for the introduction, you know, my professional background, but I think what best qualifies me for this job is that I am also a sibling.
So I have an older brother, Peter, and he is two years older than I am and he’s really just at the center of so many of my personal and professional decisions. I’ve worked in the disability field for a long time in different roles, I’ve had the honor to be able to do so many different things in my work, starting with communications and then moving on to directly support people with disabilities and their families, including siblings, and to really do some great work with siblings, and it has all been motivated by my experience with my own family.
One of my most important roles in life is as Peter’s sister. So I actually first heard about The Sibling Support Project, oh gosh, how many years ago is it now? It’s probably close to 15, maybe it’s 15 or 16 years ago that I learned about The Sibling Support Project and attended a Sibshop facilitator training, which was conducted by Don Meyer, our founder and creator of Sibshops. And during that two-day experience, my whole life changed.
I couldn’t believe, not only that here was this person and this organization dedicated entirely to supporting brothers and sisters like me, just the validation and the recognition that siblings are important, that was just so life-changing, but also, all of the things that were talked about in that training, I felt like it could have been from the pages of my own journal. And so to have that experience that I was not the only person who had experienced these things growing up and that this whole part of me that’s a sibling and has shaped so much of who I am, there are others out there who’ve had similar experiences.
So that really changed my focus, and from that point on, I really did everything I could to expand Sibling Support in New York, which is where I was living at that time. And over the years, I just kept being a squeaky wheel about Sibling, as many of us in the field who are doing the work understand. And Don retired a couple of years ago and I am the very, very lucky person who gets to carry on his legacy and all that he’s done to create space for brothers and sisters to be heard and seen and supported.
Dr. Nicole Beurkens:
Yeah. Absolutely. I mean he is a legend in his own right with what he’s done. Such a dynamic person, and what he’s created, I love how you talked about that, to create this space to acknowledge these issues, to delve into these issues, to provide support around these issues. It’s wonderful and I am passionate about making sure that as many families as possible know that these resources exist, because most of the families that I meet and the work that I do and when I do, parents usually are not aware of it. And when we start talking about concerns that they may have around their other children, those are very much there. They may not take precedence. Often in the day-to-day, the focus and the thinking is about the child with the medical needs or the developmental needs. But when you sit down and talk with parents, they do have concerns about their other kids surrounding this whole thing, and they’re not sure what to do with those or how to support those. So let’s get into that next, what you find are some of the common concerns that siblings have, common concerns that parents have around siblings, what are the things that we need to be aware of?
Sure, yeah. So I think that the first thing to acknowledge is that when we think about siblings and parents, siblings’ experience largely parallel parents’ experience. We know this from the research. So pretty much anything that we can say about being the parent of a child with special needs, and I use the term special needs as kind of a short cut, it’s vastly imperfect, I know, but pretty much anything that we can say about being the parent of a child with disability, we can put ditto marks on the siblings.
Siblings experience many, if not most of the same issues as parents, as well as some unique concerns of their own that we can certainly talk about. Yet, as you point out, when we think about the services and support that are available for siblings, as opposed to the ones that are available for parents, it’s kind of easy to see who is being left out, and Sibshops really are our answer to the same kind of common sense peer support that parents get from other parents at parent programs or parent support groups, because we want to intervene while the kids are young, because we know from the research that Sibshops do have a tremendously positive impact on the kids who attend them well into adulthood.
Dr. Nicole Beurkens:
So that mirroring, because I think that that’s true that the experience of the other children in the family very often mirror parents’ experience, so let’s delve into that a bit because we know that there’s grief, we know that there’s guilt, we know that there can be feelings of resentment — all of these. What are some of the common ones that you find that siblings express?
I think first and foremost, the need for information. And it’s one that I think parents and professionals don’t necessarily think about first, but this is one of the biggest ways that the sibling experience mirrors the parent experience is the need for information about the disability. When we think about it, parents get information from a variety of sources. They have contact with doctors and clinicians and a therapist and social workers and a whole host of professionals that can provide them with opportunity. When we think about where siblings get information from, it’s kind of up to the parents, right?
If they’re lucky, siblings get information from parents. But we know that all too often that just doesn’t happen, and it’s for the most loving, best intentions that parents don’t often share information. They don’t want to burden the child, they don’t want to worry the child. Maybe they don’t want to confuse the child. If we don’t know what’s going on, if there’s not a real clear diagnosis, or if we’re still in the process of figuring that out, what are we going to say to our 8 year old or our 5 year old that can shed light on what’s happening?
So it’s really for the most loving reasons that parents don’t often share information, but I think what is often overlooked is the fact that, you know what? The disability is not experienced by just one person in the family, right? It’s experienced by everyone, including brothers and sisters. So they’re living this. This is part of their everyday life, then when it’s not talked about and not addressed, it can become very confusing for the child and there can be almost a stigma about “This is something we don’t talk about.” As you said, the elephant in the room, right?
Dr. Nicole Beurkens:
And I think it’s important to recognize too, especially — It actually probably really doesn’t matter the age of the child. In the absence of information from adults about what’s going on and how to make sense of it, kids will come ups with their own stories about that, and many parents that I know have been shocked to hear how their kids have pieced together the information, even to the point of kids, especially younger ones, thinking that their sibling with special needs is going to die or something terrible is going to happen. And parents say “No! How could they think that!” Well, when we don’t give them good information so they know what’s going on, children will fill in those blanks themselves and try to understand it the best they can.
Absolutely, there is an expression that children are excellent observers, but often poor interpreters. So for very young siblings, preschool age who understand what’s happening around them in terms of routine and behavior, they see therapists coming into the house, they can describe maybe the behavior of their siblings and how it might be different from the behavior of other kids their age. These kids need to have information in language they can understand to understand two main things for little, little kids: They need to understand they didn’t cause the disability. You’d be shocked to know how many kids think that it was something that they said or did, a tantrum that they had or an argument they had that causes the disability. The number of young children who think that somehow they can catch this, which you think, “Why would they think that?”
But you’re right. When kids don’t have accurate information they get really creative and make things up, and it’s not such a leap to think, “Well, if I can catch my sister’s strep throat, why wouldn’t I be able to catch her spina bifida?” It’s kind of not that illogical a leap for a little mind.
Dr. Nicole Beurkens:
Absolutely. And we think about it through our adult lens, but we need to think about it through the lens of our kids and go, “Oh, wait. They’re going to come up with their own explanations.” And that’s why the providing of information at an age and developmentally appropriate level is so important. We think so often as adults that we’re protecting kids, you know as you said, by not giving the information, but actually, we’re perpetuating more problems by not just being clear and factual about what it is that’s going on.
Absolutely. And I think that plays out when kids get a little bit older, school age kids for example, they really need to have the language to explain the disability to themselves, but also to their peers, because that’s when the peer group starts becoming so important. And so, if you have kids at school who are asking you, maybe in not the nicest ways, as kids sometimes will do, asking you, “What’s wrong with your brother? Is the same thing wrong with you?” It’s really empowering for the child to have the language to respond to that. Parents who have children on the autism spectrum who say, “We don’t use the A word in our house, we don’t want to upset anyone,” we respectfully disagree with them.
We say well, actually having a word like autism to respond to those questions and to maybe end those conversations can be very empowering to a child. So for school-age kids, language to explain it to themselves and others. Teenagers need information about future planning, believe it or not, teens are already thinking about — even tweens and younger are thinking about “What’s going to happen when we get older? Who is going to take care of my brother or sister? Where are they going to live? What’s my role going to be?” And then for adult siblings, especially adult siblings who step into caregiving roles and supporting roles later in life after having really maybe not been that involved for a variety of reasons, some of which we’ve already talked about, they remind me of parents of newly diagnosed children, suddenly thrown into this world of acronyms and and waivers and service system navigation issues, you know that can be really, really daunting. So adult siblings need help navigating the system and they also need to connect with other adult siblings who get it and who can, not only share resources, but share that validation and support.
Dr. Nicole Beurkens:
Yeah, and I think for all of these ages, particularly when we’re talking about school-age and certainly teens and adults, that need for a community, because it can feel so isolating. I know you mentioned something early on in our conversation about how connecting with other people through your online forums or through an in-person or virtual Sibshop is often the first opportunity that these people have had, these siblings have had to realize, “Oh wait, there are a lot of other people out there dealing with this”, and many of the kids that we work with, they don’t know anybody else in their school or on their sports team or in their neighborhood.
Now, as we point out, that doesn’t mean there aren’t other kids in their school or whatever dealing with it, but it tends to not be talked about and it can feel very isolating and especially as they get older and maybe are taking more of those responsibilities, knowing that there’s a community of people to offer support around logistics, as well as around the emotions of it, that’s a really powerful thing.
Absolutely. Isolation really is another big concern for siblings. It kind of happens in a number of different ways: Isolation from the general community, right? Also you point out, generally we don’t talk about our lives as siblings, it just doesn’t really come up in natural daily conversations, right? Isolation from the community, isolation from our peers, as I mentioned, growing not knowing a single other sibling, nobody could possible understand what it’s like to walk in my shoes for a day, because I don’t know anyone who has any kind of similar situation, a sibling who has any kind of similar diagnosis, isolation from parents.
Siblings are pretty notorious overachievers, there is this pressure to kind of be the good kids, the perfect kid, not to put anymore on the plates of their parents who they perceive already have enough burdens, thank you very much. So I’m just not going to bring home any kind of news that’s anything but good. That can isolate you, not only from your parents, but also from your own feelings at times. Isolation from even your sibling. Many siblings talk about watching their friends interact with their brothers and sisters who don’t have disabilities and watching them play or share clothes or talk about school or talk about their hopes and dreams, and that’s not the same kind of reciprocal relationship that they have with their brothers and sisters. So there can even be an isolation from the child with the disabilities.
So isolation and loss, I think are also really big issues for siblings. Resentment, you mentioned that. That’s a big one. You know, when family life seems to revolve around one person, it’s pretty easy to understand how the other family members, including the sibling, would feel resentful of that. So family resources are usually locked up in that kid, right? Family resources including time and attention, financial resources, daily routines and activities, community outings, the ability to go to a restaurant and have dinner or to go on vacation. For siblings, they see their friends being able to kind of pick up and go and do these things with their families and they don’t have that same opportunity, so that can cause a lot of resentment. Also, when expectations for the child with the disability are different from expectations for the child without the disability, when it comes to things like chores or behaviors, when the child with the disability is sort of overindulged or allowed to get away with behaviors that are unacceptable for the other kiddo, that can be pretty frustrating for kids.
Dr. Nicole Beurkens:
Yes. All of these things come up so frequently, and I think what you’re saying about many siblings kind of Walling off their own emotional experience with this, that really can lead to some challenges for siblings down the road: Increased risk of things like anxiety, depression, those kinds of things, a feeling like “It’s not okay for me to feel this way”, so beating themselves up and feeling guilty over it and not having an outlet for it. Couple that with feeling like “I need to be perfect. I can’t put anything else on my parents”, which is interesting because we were talking about how parents often try to shield the siblings by not giving information and that goes the other way too, where the other children will say, “No, can’t bring this to mom and dad.”
So they deal with a lot in themselves and I think that’s why this whole conversation is so important because siblings need to have outlets and opportunities on a regular basis to acknowledge how they’re feeling, to not be made to feel ashamed or bad about those, to know that those are normal things, and to receive skills and tools that they can use to navigate that for themselves.
Absolutely, and I’m glad that you mentioned guilt, because guilt is the gift that keeps on giving, kind of, part of that cycle of resentment and then guilt, and it can be so important to validate that guilt. Because as you point out, what’s worse than feeling resentful or isolated or whatever? Well, it’s feeling those negative things, and then also feeling wrong for it and feeling guilty about it. And so, we talk about creating space, whether it’s in Sibshops and also hopefully at home, creating space for siblings to express the not-so-good stuff, to validate that, to really hear it and to help siblings kind of move through it.
Dr. Nicole Beurkens:
Yeah, so important, and again, as you said that those tools then and those opportunities carry over into home life, giving parents the tools and the understanding that these need to be ongoing conversations.
Absolutely. When we talk about making sure that school-age kids, for example, have information about their brothers and sisters, you know, we’ve talked to a lot of kids over the years and survey says that these kiddos do not want a big sit-down, birds and the bees conversation about “Your sibling’s disability”. Who wants that! They want casual, periodic check-ins about what’s going on with them and what are their latest thoughts about the disability? Do they have any questions? So we encourage parents, on the way to soccer practice, for example, ask your child, “Hey, if your friends asked you what’s going on with your sister’s cerebral palsy, what are you telling them these days?” And if the response is pretty much on target and accurate, you can pat them on the head and send them off to soccer practice. And if it needs a little tweaking, you can do that too.
You can tell when kids are sort of finished with the conversation, and I think that’s kind of the beauty of Sibshops. At Sibshops, we are very intentional saying that Sibshops are not therapy group or otherwise. Sibshops are celebrations of the many contributions of siblings. We provide opportunities for siblings to talk about the good — By the way, there’s a lot of good that they talk about, and the not-so-good, we hold that space to validate, to really hear it, and then to move on.
Siblings, more than anything, want to be heard. They want to be seen and heard. There is so much value in that. Sometimes parents feel that helping the sibling is kind of a mountain that they need to climb and they don’t even know where to begin, as you said. We get those calls all the time, “I have a 10 year old son with autism, he has an 8 year old sibling sister with no disabilities, and we’re kind of starting to think that the autism is impacting her somehow.” And I say, “You know, you might be onto something.” But joking aside, yes, absolutely. Let’s talk about what you’re seeing and observing. But I think parents would be pleasantly surprised to realize that with siblings, a little goes a long way in terms of support. And it’s not — parents are so empowered to help their young children and their teens and their older children, so empowered to help in even tiny ways that make such a big difference.
Dr. Nicole Beurkens:
Yeah, it doesn’t have to be a huge ongoing production. It’s more the embedding of it into the culture of your family and how you are and how you talk about it. We’ve covered a lot of the concerns that come up, but I want to make sure that we touch on some of the unique opportunities that siblings experience, because certainly there are some wonderful and amazing things that come out of the experience of being a sibling to someone with special needs.
Absolutely. I think that for every concern, there are just as many if not more opportunities. The same way parents tell us, “It might not have been honestly my first choice to have a kiddo with a disability, but I have to say, there have been some wonderful silver linings. I made some of my best friends in other parents, I’ve done things like testify before public officials, I never thought I could do that.” It’s really the same thing with siblings, there are a lot of sort of hard-won silver linings, but they are silver linings all the same. And I think one of the most important ones that people talk about is tolerance, which in today’s day and age, with everything happening in our country and around the world, tolerance is a very valuable attribute.
Our whole world needs a whole lot more tolerance. And if siblings, I think, are steering the ship, we are in good shape. Because for siblings, diversity training begins 365 days a year before breakfast. Siblings know what it’s like to live and be close to someone who is different. And because of their early exposure to their brothers and sisters with disabilities, siblings are really good at making room for difference. Difference is not such a big deal. Siblings are very adept at meeting people where they are and accepting people for who they are. I think that’s largely because unfortunately too often, they have seen the repercussions of other people not extending that same courtesy to their brothers and sisters. They are very much aware of the consequences of prejudice. So siblings tend to be very embracing and tolerant and great about creating space for difference. And who couldn’t use a little more of that in today’s world?
Dr. Nicole Beurkens:
The world needs a lot more of that right now, especially, for sure. And I would think one of the silver linings and things that come out is just opportunity for really developing and flexing that resilience muscle, that ability to persevere despite adversity or to handle disappointments — that’s the reality oftentimes of the situation when you have a sibling with disabilities, but the upside of that is what a wonderful training grounds for these young siblings as they work their way into adulthood, to just be able to be more resilient.
Absolutely. And a lot of the time, they see that resilience and that grit in their own brothers and sisters. They’re inspired by it. And if they think, “You know, if my sibling can wake up everyday and do what they do, there is no reason that I can’t.” So I think that inspiration, appreciation for their families. I think sometimes parents worry, like, “What is my kid going to say when I drop them off at the Sibshop door?” And they’d be very pleasantly surprised to just know how much gratitude is expressed during Sibshops, a real appreciation for parents, they recognize that parents are doing a lot to hold things together and keep the world going around, keep their family world spinning. Appreciation for our health, I think most of us, especially when we’re young we think we’re pretty invincible, but if you have a sibling who has had four surgeries by the time they are six years old, you probably think differently about health. So there’s a lot of appreciation.
Vocation, a lot of us siblings find our way into helping fields, and the research backs it up, there is no secret to that.
Advocacy, siblings make some of the most passionate and compelling advocates. Certainly, formal advocacy roles, we love it when siblings play formal advocacy roles, but also, I think of Uppercase A Advocacy, there are formal roles, maybe in a leadership position in a disability organization that supports people and families. But just as important as what we consider — We call it Lowercase a Advocacy, it happens on playgrounds and at bus stops and in coffeeshops everyday in every community around the world. And it’s when siblings are standing up for and with people who they see are not being treated fairly. They’re standing up for justice and equity, not just for their brothers and sisters, not even always just for other people with disabilities, but for anyone they see who they feel and perceive is being slighted and being not treated fairly. So I think that there are so many opportunities.
Before I talked about how sometimes siblings can grow very isolated from even their brothers and sisters when they compare those relationships to the relationships that their friends have with their typically developing brothers and sisters, for as many of those siblings, we also hear stories from siblings who say, “You know? I have such a special bond with my brother/sister”, maybe that brother or sister is nonverbal or has limited verbal communication, but they understand them. They know exactly what they’re thinking and feeling. Sometimes they even develop their own language to communicate and they sort of translate.
So I think there are just as many unique opportunities that siblings experience and we, I think, at the end of the day just need to understand that the sibling experience is not all good or all bad. I think that especially the media, we kind of try to paint siblings in a box and put them in a nice little neat box that the sibling experience is X, Y or Z, and it’s really not all good or all bad, it’s really all of the above at any given time, depending on what’s going on. And so I think the more that we can recognize that, the better able we’ll be able to support brothers and sisters.
Dr. Nicole Beurkens:
Absolutely, and to just make space for both of those things: To make space for the positives and the hard stuff and just realize that that’s all part of it and that that’s all okay and that there are great opportunities for growth in that too. I love that. Speaking of support, let’s touch on some of the ways that parents and professionals can support siblings. What are a couple of things that you feel are really beneficial that often are overlooked?
Yeah, thank you for asking. I think first and foremost, provide siblings with information in age-appropriate language. So through written materials, of course, through conversations, I think parents need to be really proactive about opening the door to that conversation, and as you said, kind of shaping family culture in a way that it’s okay to ask questions. I think that professionals need to make themselves available to siblings and kind of take a moment to pause and to think about siblings, in that if a parent says, “You know what? I’m going to bring my son for therapy next week. He has a younger sister and she actually has some questions about what’s going on with his treatment or what’s happening with his diagnosis right now. Would you spend 10 minutes just talking with her?” That can be such a powerful tool, because sometimes it’s just refreshing to hear information in a different adult voice, right? Ask my kids, who if I say something it’s like in one ear out the other ear, but another adult says it, and it’s discovery time, right?
So I think information is really important. I think to provide siblings with opportunities to meet other siblings of kids with disabilities, of people with disabilities. And Sibshops are obviously a great way to do that, but they’re not the only way. Maybe your family receives support from an organization that has some kind of annual family event or a buddy walk or a picnic or a holiday or something. Why not carve out some time for siblings to get together around some kind of activity or initiative in conjunction with that thing that the organization is doing? Even playdates, parents having playdates for their kids with disabilities, why not invite the siblings along so that they can meet each other as well? To encourage good communication among parents and children, I will say that the number one tool that we always share from our tool belt is active listening.
And this is the idea that we’re not necessarily providing solutions all the time, but we are being very present when we are listening to a child or an adult, right? By acknowledging what they say through nonverbal prompts, through verbal prompts, asking questions and really creating the space for that person to be heard and also to kind of talk through their own process of how we’re going to overcome this challenge. Active listening is really important.
For parents, this is my number one tip: To carve out time for the child who does not have the disability. This is oftentimes when parents glare at me and think, “What, really?” Because how many of us feel like we have enough time in the day, any given day? None of us, right? But as I said before, the really good news here is that for siblings, a little goes a long way. And so, I would share for me growing up, it was 15 minutes in the car on a Friday afternoon with my mom, driving to pick up dinner, takeout dinner, and 15 minutes in the car on the way home. And we could talk about nothing or anything. And it was just my time with my mom, it was the most precious time of my week.
Other siblings have told us what has made the most difference. “Oh, it’s actually just 15 minutes at the end of the day after they would put my brother with disabilities to bed, I would have that time all to myself with my mom/my dad/whoever.” Other times, siblings have said, “My parents and I kept a journal and so I would write a note and leave it on their pillow, and then they would write a note when they had time and leave it on my pillow.” And It’s not a deadline or something that has to be done a certain time of week. Whenever you’re thinking about the kiddo. “Hey! Hope your math test went well, let me know how your day was.” Just quick little notes to let the person know that you’re thinking about them. These little things can go such a long way.
Dr. Nicole Beurkens:
I love it. Such great practical tools that our listeners can take and start implementing right away. I love that. I want to make sure as we’re wrapping up here that people know where they can find out more about the work that you all are doing, about Sibshops that might be in their area, where are the best places for them to get information?
Yeah, thank you for asking. So we have a website and it’s siblingsupport.org and that is where people can find out more about Sibshops. We offer trainings, so if you’re a professional who is interested or a parents who is interested, a lot of our Sibshops have been started by moms who are the doers and shakers, as we know, right? So we offer these trainings, now they’re all online because of the current environment, which is, I think a silver lining of this whole pandemic, that we’ve been able to bring our trainings online and make them much more accessible to people. We have a whole page on books and publications, not only our own, but we have a whole spreadsheet of books for siblings that have been recommended by Sibshop facilitators from across the country.
You can connect to our online groups there. So I would say that that is probably the best place. And then I also want to put in a plug for the National Sibling Leadership Network, you mentioned it in the intro. I sort of call them a sister organization to us. The National Sibling Leadership Network was created in 2007 by adult siblings some of whom had participated in Sibshops as kids, others who happened to be expert researchers and having done all this great sibling research, and people working to influence services and supports and policy. If there are adult siblings listening, I encourage you to checkout siblingleadership.org, because what the Sibling Leadership Network has done is created a national network of state chapters where adult siblings can meet other adult siblings who are local, who live in the same communities. And they get together for social purposes, maybe sometimes for advocacy initiatives, but it’s just a nice way, in addition to our online groups, to really connect with other siblings.
Dr. Nicole Beurkens:
Awesome. And I believe on the Sibling Support website, and we’ll make sure all of those links are with the show notes so all of you listening can just easily click on those. I believe there is also a directory there too. I mean right now, Sibshops are happening more online, but as things go back in-person, people can find organizations, agencies, Sibshops that exist in their local area, right?
For sure. You can search by state and by country for Sibshops, which is a really nice way to locate community-based supports that are nearby.
Dr. Nicole Beurkens:
Awesome. Such great resources. I highly recommend that all of you listening check those out. Emily, what a wonderful conversation. Thank you for taking time out of your day to be here and first of all to do the really important work that you are doing, but also taking the time to share that with all of us. Thank you so much.
Well, thank you so much and thanks for shining the light on siblings!
Dr. Nicole Beurkens:
And thanks to all of you for listening, we’ll catch you back here again next week for our next episode of The Better Behavior Show.