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Siblings and Disabilities

Updated: Feb 13, 2023


Having a child with a disability can have a big impact on parents, but what does it do to siblings? Jane helps us understand the role disabilities play in sibling life and how caregivers, family, and friends can help make a difference. Email us: parents@thefamilyplaceutah.org


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Jen: Hello and welcome to the Parents Place, a podcast put out by the Family Place for parents to develop skills that will strengthen families and provide tools that will help each of us in our parenting efforts. No matter our skills, we can always use reminders that help us work towards a safer, happier home. I'm your host. Jennifer Daly, the education director at the Family Place and my co-host is Sara Hendricks, a family educator at the Family Place. Every week, we will interview professionals that will provide valuable information that will make a difference when you apply it directly to your life. Thank you for joining us. Now, let's get started with today's episode.


Welcome to the Parents Place podcast. I'm your host, Jen Daly,


Sara: and I'm your co-host, Sara Hendricks.


Jen: Today we have an awesome guest who is going to help us understand the impacts on civilians who have a brother or sister with a disability. Welcome, Jane. Do you want to tell us a little bit about yourself?


Jane: Hi, thanks for having me. I'm Jane and I have a little sister named Kate, who has a rare disability called Prader Willi syndrome. But it's a developmental disability that causes a lot of behavioral issues and intellectual disability along with mental illness. I'm just finishing up my bachelor's in social work and am going to be starting my master's in social work shortly. And I am especially interested in areas of family welfare and helping families with a member with disabilities. And I'm especially interested in siblings. I've done extensive research on how they're impacted by their sibling’s disability, and I'm happy to be here.

Sara: Awesome. Well, we're excited to have you. We have sat in on a workshop that you did, and we learned so much that we wanted to invite you to do this podcast with us. I would imagine that siblings might get a little overlooked when there's a sibling that has a disability because there's so much time and attention that goes into that child. And so, this episode is to maybe help parents who have this in their home and also to help our listeners who may not have any disabilities be able to be more empathetic towards those families and know how to make a difference for them. So, what are specific things parents can do to help siblings?


Jane: Right. So, I always love talking about this because there are really specific things that parents can do, and they're really small things that can really make a big influence. So, one of these things is just communication. Oftentimes, parents are incredibly overwhelmed, and sometimes it gets hard even to have a conversation with your sibling. I know in a lot of my research one of the things that siblings wish their parents would do was to just talk to them. I know it really helps. I mean, it is really therapeutic and helps them to be able to manage their feelings and to just have some support. And so, I would definitely say communication also spending time with your children without disabilities. I know this is also one of the things that siblings said. They just wish their parents would just spend time with them, and oftentimes they feel guilty asking their parents for attention because they know their parents are incredibly overwhelmed and that the sibling with disabilities needs it a lot more. So just spending time with them is so important, and it just does a world of good. Also, it's really important to like assess how much caregiving responsibilities siblings have. I know this for me, my sister and myself. We were the go to caregivers of my little sister with disabilities. Just because we knew the syndrome, we knew how to do it and we were there. So, it was so easy for us to just spend all the time. But this takes an immense toll on siblings. Not only do they not have time to do normal things like hanging out with friends and doing homework, but it's immense stress and responsibility that a lot of times can do a lot of harm for siblings.

Jen: That is a lot of great information, Jane, I appreciate it. I think lots of parents forget that. Not necessarily forget, but I think they think that their kids just don't want to talk to them, especially when they get older. And I think it's super important to keep those communication lines open. Number one, so that you can see if they are getting overstressed in these situations and then also just to make sure that they are feeling valued as a family member as well. Super important. So, with that being said, what are some of the impacts that you have seen or your research has found have been on siblings?


Jane: So, my personal experiences and all my research is just amazing, like how immense the impacts are on siblings and had no idea that even I was affected so greatly by this. Like I know, it took me actually getting diagnosed with post-traumatic stress disorder from living with my sister. For me to kind of realize that we have, this actually does kind of take a toll and they do have really surprising impacts. So, one of the things I found in my research was 20 percent of siblings have clinically significant symptoms of distress. So clinically significant, meaning they are severe enough that they need treatment. And also, this one really was powerful and. Heartbreaking to me was fifty nine percent of the siblings that I interviewed had clinically significant symptoms of post-traumatic stress disorder. It's just astounding and just heartbreaking to me. I also run a support group for siblings of individuals with disabilities, and it's just astounding how much these kids are impacted. But they are just really hit hard, every single one of them. Siblings also have a weakened resilience because they have this chronic trauma where they get inundated with all of these stressors and big tantrums and events that they are unable to bounce back as quickly. So, when they have other kind of stressful events in their life or hardships, like a parental divorce or just transitions or struggles with friends, they really have trouble bouncing back and getting through this hardships because their resilience has been so we can from this chronic trauma. Another really fascinating thing was we found a predictor of trauma. And so, and this was the ratio of positive to negative emotions, and siblings reported a lower ratio of positive to negative emotions. And so, the ideal ratio is five positives to every one negative emotion. And so, this is really a clear thing that indicates that you are going to be struggling with being a sibling. So, if we can really increase those positive emotions that siblings feel, then we can increase the chance that they won't be affected as much by the trauma and that they can have an overall better well-being.

Sara: I love that. I think that is such good advice to be for every one negative, putting in five positive experiences into a child to really help them not take on so much of the stress and trauma that can come with having a sibling that has a disability. I think that is a really great tip for parents to try to incorporate in their homes.


Jen: I also like that you brought up protective factors or just a buffer. I think we need to understand that for all of those hard situations, if our kids do have that buffer or that protective factor of an adult that can turn to and talk to you, or they have a time to wear that, it is just their time. Those are the things that are going to help that resiliency grow if they do have those buffers or protective factors. And I'm really excited because we will have an episode on protective factors.


Jane: Yeah, that's incredibly important. I know it’s kind of scary to just say that, oh, because you have a sibling with disabilities, you're automatically gonna have a lower well-being and you're going to have post-traumatic stress disorder. And that's not fair. There are things that parents can do and siblings can do to increase protective factors like Jen said and decrease the risk factors. And so, you can have a healthy wellbeing and a positive life and have a great relationship with your sibling with disabilities.


Jen: I think it makes a lot of sense that kids that have a sibling in their home with a disability tend to have a harder time just because kids thrive so much off of routine. And when there is that child that needs extra care and does have behaviors, maybe on the blue, that routine that schedule that predictability kind of goes out the window for other kids. And so, it definitely makes sense of why it's a little bit harder.


Sara: Yeah. And just thinking about adverse childhood experiences, I honestly, this isn't a topic that I've thought a lot about because it's not something that affected me in my childhood. And so, it just makes sense to think that those adverse childhood experiences, I mean, that's going to have a bigger effect on a family if there's a child in the family with a disability and how it's going to impact the siblings. So, the statistics that you're sharing, all of that, it makes sense. And it's not something that I've really thought a lot about. And so hopefully this episode will help our listeners who are in the same boat as me who don't have those experiences. I had a cousin, have a cousin, who has Down syndrome, but even in all the interactions that I've had throughout my lifetime, I didn't see the way it could be impacting the siblings, you know? And so, it's just not something that's been present in my mind, I guess.


Jen: It's their norm. Yeah. So, it should be OK.

Jane: Yeah, I didn't even know that it was impacting me until I was diagnosed with post-traumatic stress disorder. That was incredibly shocking and overwhelming to me. I just have a little sister with disabilities. How do I have this really serious disorder that like takes a lot of trauma to get? I just can't understand. And that my mom couldn't understand that, and we really had to learn together that, yeah, this really took a toll and my mom didn't have any idea that that was impacting me and it impacted all my siblings so severely. And that's what I love is there are specific things that you can do to make this siblings lives better and to make them thrive more. We weren't even aware of these things when I was four, and my mom had no idea. And so now we need to advocate for them because there are things that we can do.


Sara: Yeah, because you've been through it and now you know how it could have been better for you. And so, by advocating and helping those families, that's our hope. With this podcast, I'm sure with your groups that you do all the research and articles and things that you've posted. So, can you tell us why some siblings might act out more than others?


Jane: Yeah. So, this is really interesting. I know, especially a lot of families have been really concerned because some of their children without disabilities will really act out and kind of turn against this family member with disabilities and tease them and like provoke them and stuff like that. And the parents get really worried and just sometimes just assume they have like behavioral issues. But this is a common occurrence. And like a lot of family members, I know I was a sibling who would provoke my little sister and tease her, and I seemed to act out a lot and this like really worried my parents and they got extremely mad at me and tried to use the normal disciplinary tactics that they use for regular children. And it just didn't work on me. I just couldn't stop and I didn't know why I felt so guilty. And then the parents on top of it, getting mad at me and making me feel bad. I was just a mess and I have really low self-esteem and I just could not stop making Kate mad and doing things to provoke her. And I just can't understand why. And this was very interesting. Probably one of the most life-changing things that has come from this research was I found out that the reason that I was provoking Kate and kind of acting out or whatever was because I had absolutely no control and provoking Kate to have a meltdown gave me some control and is really what helped me survive. I did not have any skills to help me deal with this situation, so I have come up with subconsciously this coping mechanism that was helping me survive. But it was really unhealthy, doing a lot of damage, and we found that so many siblings do this to like one in every family, basically has a child who does this, but also some siblings kind of act perfectly, which is fascinating. They seem to like, handle their situation so well and are kind of like the perfect caregivers. But we need to recognize that these siblings are also in distress as well. I don't know my sister Emma. She was one of these siblings who seemed to be perfect and just made me look bad, honestly. But these siblings are struggling as well. They are just a lot of the times they feel so guilty not taking care of their sibling that they put their own well-being to the side and just, like, dive into helping and then their needs don't get met. And even when they are struggling a lot, they still like help. And so that's also very problematic as well. Another thing some siblings tend to do is just completely ignore their sibling with disabilities want nothing to do with them. They are a part of their lives at all. And it's also important to realize that it's often just too painful for them and not to try to force their relationship because they need to have the skills and they need to be in a place where they are doing well and have resilience so that they can form a healthy relationship.

Sara: That makes a lot of sense because one thing that we know about children in general is even negative. Attention is still attention. And so, outbursts and provoking, you're getting discipline from your parents, but you're still getting attention,


Jane: Right, siblings. That's one of the things we've talked about today. Siblings, kind of. They fall through the cracks because having a child with disabilities takes immense resources and time and energy. And I get that and it's really hard. But their needs don't seem to them, they don't seem as important, which is hard.


Sara: And I can understand those three different behaviors of those siblings. So, the one that provokes, the perfect child, and the one that's absent. The perfect child, I could understand that perspective of like I don't want to cause any more things for my parents, I have to be the perfect child. And how that can cause a lot of overwhelm that you don't want to mess up or make mistakes. Or, you know, I can totally see how all of these different behaviors could cause trauma for those siblings. Right?

Jen: Bottling it all up and keeping it inside and not having that outlet for it because you don't want to tarnish that perspective that people have of you or don't want to cause problems either.


Sara: So right. It is important, like you said. So, there was like nurturing siblings, as I call them, the ones that are seemingly perfect and dealt with it perfectly. They tend to get their pride and from knowing that they are doing well, taking care of their siblings and the parents tend to give them praise and thank them and tend to think positively about them. Where is that triggering? Similar to the provoking sales, they do get attention from acting out, but the parents also tend to look down on these children because they cause the parents more grief because they rile with the child with disabilities. So, it's just important to, like we said, like just spend time with them and doing these things will kind of make these behaviors go away. I know for me, like I was horrific to my little sister Kate, and we just had a horrible relationship and I never thought I was going to get better. But what I like went to therapy and built myself up again and built a bunch of skills, and my wellbeing was improved and my resilience was improved. I have been able to form a really good relationship with Kate, and I no longer need this triggering or provoking coping mechanism. So, I feel like when children are displaying these really extreme behaviors, that's kind of a red flag that something's not right and that their bodies and their minds are trying to get control of the situation because they don't have any other and they don't have enough positive protective factors and coping mechanisms to handle the situation that they have. Their bodies and subconscious is having to come up with their own.


Jen: So, as you were talking about the provoking and the nurturing sibling and then the absence sibling just dawned on me, those are all no matter which one it is. It's all for attention. So, each one of those kids have learned, if I really poke the beehive, I'm going to get attention no matter what. If I do the very best that I can, that's going to get me attention as well. And then if I ignore them or I'm absent, they're going to wonder what's wrong, which means they're going to pay more attention. It's all attention seeking. And I think it's just so important. It's not just with kids that grow up in a family that have a sibling with disabilities, it's just kids in general. They will find anything and everything they can do to get attention, positive or negative.


Jane: Yeah, that's something that I personally had to deal with is a lot of my needs weren't met, and I think that goes along with attention. A lot of the times, like my basic needs were met, but a lot of those higher functioning needs were not met when I was a child and a lot of these siblings, those needs aren't met. So, they are trying to come up with ways to meet their own needs by getting attention and doing these behaviors that they don't even know why they're doing them. And it's fascinating how consistent they are.


Jen: We have lots of people around us and that is another one of the protective factors is just having a support system. So how can those people who are in our lives that love us and want to help us? What is the best way to help a family that has a child with disabilities?

Jane: First of all, you're just making an effort to be part of their lives and not just write them off because it could be a little difficult because they have a family member with disabilities. So just making any effort is just fantastic. One of the first things I would say is just learn about the condition of the child with disabilities. I don't know how many times we have friends who just have no idea what's going on or a family member that we've known our whole lives. They just have no idea what's going on with Kate. And so, they don't know what to expect. And when something does happen, it freaks out and they just completely withdraw and they don't come around as often and stuff like that. So, you could just google it, just search the syndrome or their condition, ask the parents, ask the siblings how it affects them. It's so surprising how many people just assume things about it and they can even like, say, offensive things just because they don't really know what's going on. This next one is a little bit daunting, but one of the most beneficial things you can do is to take the child with disabilities every once in a while, like take them to do something fun to just to give the parents and the siblings a break. I know my parents still don't. We've never had a family member or friend that can take Kate for a little bit like if there's an emergency, we just don't know what to do. We don't know where to take her because no one is equipped. No one can handle it. I know that has caused myself some grief because my mom will be like, “Oh, we want to go on a trip”. But like, they go through all of their family members, all their friends and like, “Oh, they can not handle it”, and then they just make me do it or my other siblings do it because we know how to do it, even if we were like younger. So, or if that doesn't end up working. Take the other siblings for a while because they need a break as well, and they need somewhere to go when their family member with disabilities is having a tantrum or things like that. So that would be fantastic and just be there for them. It's kind of heartbreaking how many people can't handle an individual with disabilities, and so they just kind of back out of their families lives, which families of individuals with disabilities are already under immense stress. There are wonderful things that come with having a child with siblings, with disabilities, but that's sometimes too much for family and friends, so they'll just start to back away, which causes even more hurt and pain. So, it's just so important to just be there for them.

Jen: You mentioned that there are some good things that come along with us. Can you share some of those? Like, I'm just thinking, if you grow up in a home with somebody who has disabilities, I mean, there's a lot of good skills that come along with that. So, there are some benefits. It's not negative.


Jane: No, it's not all bad! And you see, I start all my presentations just by seeing how much I love my little sister. No one can make me happier. No one can make me laugh harder. And siblings, for the most part, feel the same way about their family member with disabilities. I know most siblings describe their relationship as like their most precious, and most siblings would say they would do it again in a heartbeat. They love having their sibling in their life, and there are some real benefits. I know patience is increased. Siblings tend to mature really quickly, and they have a lot of communication skills, a lot of emotional empathy and a lot of their capacities really are developed. But I will have to say that a lot of parents I've found tend to use this as an excuse and just say, Oh, no, being a sibling is such a great experience which it is. I'm not denying that it's an amazing experience and I wouldn't change it for the world. But there are things to make it better and make it so there is not damage occurring and so that they can have these really positive experiences that come from being a sibling because there are so many. And to have those be what they take from the experience instead of all of these negative things, and that will stay with them as adults.


Sara: That's so great, and I love that you suggested for those who know families that have a child with disabilities to get to know what that disability is, Google and learn more about it. Don't leave them high and dry and not be part of their life because you feel intimidated by that disability, but equip yourself and know what it is and how you can help them and be a support to them. So, do you have any resources that you can share with us?


Jane: Yes, I have lots of resources. The first thing that I would say is make sure you have DSP funding from the Division of Services for persons with disabilities. That's life changing for the entire family, and that really makes it sad to say it, but it makes everything better. So, there are a lot of ways if you're not on the waiting list, please get on the waiting list as soon as possible. I think that's the biggest thing that you can do because getting funding for respite help and things like that is just so life-changing to not have to rely on the siblings to be able to have breaks is just so valuable and will benefit the whole entire family. Also, so being a sibling to someone with disabilities is an adverse childhood effect, and it comes with a lot of risks for psychological conditions and things like that. So, every sibling should be getting professional help. And so, if your child is not in therapy, I would highly suggest it and we also will. Hosts and resources to help finding professional help, but you can Psychology Today is such a great resource for finding professional help.


Sara: Do you think that the disability like there's a spectrum of like, I mean, obviously some disabilities are going to be so much harder on the family than others. And so, to suggest doing therapy, would you say that that is across the board, no matter the disability or the more severe the disability is than, yes, those siblings need to be in therapy?


Jane: Honestly, I would suggest everyone because it has the potential. I would say, rather be safe than sorry. So, I would have therapy. And if this even just to assess, have a professional, assess how your child is doing and then if they conclude that the sibling is doing all right and they're thriving and they have a stable well-being, then it would be OK not to continue services. But I would say, if possible, every single sibling should, because there are those risk factors for emotional and psychological stressors and conditions that I would suggest that every single so we've had early intervention, so getting treatment as quickly as possible helps immensely. I would definitely recommend every single, no matter how severe,


Jen: It could be really beneficial of just that child of having a person that's not connected is involved with the rest of the family and they can just go and talk and not have to worry about hurting anyone's feelings, anything like that. And if they have a bad day with a sibling, they can say, I like my sibling today and it's OK and it's not going to get mad. Say you've got love your siblings. I can see it being super beneficial for kids. And yeah, it may be that you just need to go in once and get obsessed. Or maybe it's once a month to where you just need an outlet to be able to kind of dump those emotions.


Jane: Right. I know when I started therapy, that was a real turning point for me. I was just saying before that I was incredibly hopeless. I never thought I was going to have a good relationship with Kate. I just and I didn't know what was going on with my body. I didn't know what was happening and why I was doing these things. And so, once I had a professional tell me that I was triggering Kate because it was helping me be more in control, that was completely life changing. And then I was able to start to build those skills up. And so, I can't recommend therapy enough along with all these other things to help improve wellbeing.


Sara: Yeah, I just think that's such a good thing to clarify because I know for myself that I would listen and think, Well, that doesn't apply to us because it's not that big of a deal, because when you're in it, you know, you don't think of it as being anything. It's your normal. And so, I just I'm glad to have that clarification because I'm sure there will be listeners that think it doesn't apply to them. So, to just have that baseline of every sibling should start out with therapy and go from there.


Jen: Yes, I think then you like you said you have that baseline. And so, if there are hiccups that you come in and say, “Oh, what's going on? That behaviors changed from, you know, what it was previous. And so, you can see if there's behaviors that are all of a sudden coming out that aren't developmental behaviors that are just normal for growing up and things like that. So, it does give you a good baseline.


Sara: So, then I also hear therapy and think we can't afford that. So, are there resources for that to help pay for things or free therapy?


Jane: So that is tricky. I know a lot of times there are community resources. I know the Family Place has some great resources for therapy. I know they're also online resources for online therapy, which are significantly cheaper. Like I also know there are a lot of community centers offer reduced price therapy. So, a little bit of research, and I'm sure you can find some great resources if private therapy is not an option.


Jen: You think if you live next to a university and they have a psychology department or a social work department, they normally have, you know, master level students that are doing therapy to get that experience. So that's definitely and it's normally cheaper. It's on a sliding scale fee. And yeah, there's a lot I would think there's lots of places you just have to kind of look in your community for the sliding scale fee places, that take your income into consideration and other circumstances that you may have. So, if you have 10 kids and you know, that's hard to pay for, so just really talking to people and being open with them, and I think there's people out there that want to help.

Jane: I would also add that group therapy and support groups for siblings of individuals with disabilities is also very helpful, along with private therapy. And I know groups like NAMI, the National Alliance on Mental Illness has free sessions for teenagers who are struggling with some mental illnesses and stuff like that. So that's a great resource.

Jen: One other place you can look is your school. Lots of schools have counselors and your kids can meet with as well.

Sara: That's a great suggestion. Well, thank you, Jane, for being part of our podcast today. You've shared some really great information that will help a lot of people, and we appreciate getting to learn from you. You're obviously very well versed in this topic. It's clear that you have very personal experiences, and we appreciate that you're willing to be vulnerable and share that with us and our listeners. So, to our listeners, all of the resources that Jane has shared will be linked in our show notes, and there are more resources than she even talked about that are available. So, check the show notes if you're in need of things for your family. If you have any questions about today's episode or parenting in general, please email us at parents at thefamilyplaceutah.org. You can also find us on social media. Go to Facebook and search Jen Daly Dash, the Family Place or Sara Hendricks Dash the Family Place. And we also have a Facebook group called The Parents Place. Same name as the podcast, so you can go there to connect with other parents and ask questions. We have family educators that participate in that page to give research-based information and help guide parents in the things that they are searching for. All of these are places where you can get in contact with Jen and myself and send us any of the questions that you have. Thanks for hanging out with us today. We'll catch you again next week on the Parents Place.

Thanks again for listening. The family place is a non-profit organization in Logan, Utah, with a mission to strengthen families and protect children. We call ourselves starfish throwers. If you're unsure what that means, refer back to our introduction episode where we explain it. The good news is you can be a starfish thrower too by subscribing to the Parents Place podcast and liking our social media pages. If this episode resonated with you, please share it with others and help us get our message out to more people. Also, be sure to check the show notes for links to information referenced in this episode. That's all for now, but we'll catch you again next time on the Parents Place.

Finding a professional: www.psychologytoday.com

Respite care: - https://www.kidswaivers.org/ - https://kidshealth.org/en/parents/respite-care.html -https://www.childwelfare.gov/topics/systemwide/service-array/services-to-children-and-youth-with-disabilities/youth/grandparents/ https://www.verywellfamily.com/coping-skills-for-kids-4586871 - https://www.understood.org/en/friends-feelings/common-challenges/self-control/developing-coping-skills-5-ways-to-help-kids-who-struggle-with-self-control - https://positivepsychology.com/coping/ -https://kidshealth.org/en/teens/positive-emotions.html#:~:text=Increase%20a%20Specific%20Positive%20Emotion&text=Let's%20say%20you%20want%20to,joyful%20whenever%20you%20hear%20it - https://positivepsychology.com/6-positive-emotion-exercises/ - https://www.siblingsupport.org/sibshops/salt-lake-sibshops - https://utahparentcenter.org/resources/siblings/ - https://www.headspace.com/meditation/kids - https://www.psychologytoday.com/us/blog/relationship-emporium/201910/howhelp-your-family-thrive-the-essentials


Contact: - Record questions here: https://anchor.fm/theparentsplace

- Email us: parents@thefamilyplaceutah.org

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