Supporting Special Needs Siblings

Marsh and Drake chat with author Jessica Leving about her book, upcoming podcast and her brother Billy who is autistic.

Links to the referenced resources:

1. Special Siblings web site: supportingspecialsiblings.com

2. Book on Amazon: https://www.amazon.com/Special-Siblings-Growing-sibling-special/dp/1686677324/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1570154209&sr=8-1

3. Special Siblings page on Facebook: facebook.com/supportingspecialsiblings

4. Adult sibling group on Facebook: https://www.facebook.com/groups/SibNet/

Transcript

Marsh Naidoo (00:14):

Welcome to this episode of Raising Kellan, the podcast to motivate, inspire, and educate parents raising kids with special needs. I'm your host, Marsh Schneider, and tonight I'm joined by Drake Box, the inspiration for the Raising Care podcast as well as Jessica Living. Jessica is author of Special Siblings. Welcome to the show Jessica!

Jessica Leving (00:43):

Thank you. Thanks so much for having me.

Marsh Naidoo (00:46):

Jessica, walk us through special siblings. What is the origin story?

Jessica Leving (00:52):

Sure. Yeah, so it actually started when I was in high school and my brother Billy has autism and he's six years younger than me and he was doing therapy services at a local agency near us and one of the therapists that he worked with mentioned to my mom that they had a bunch of siblings coming in who were also having some very unique challenges and they really didn't have a lot of resources and they said, Wouldn't it be great if they had a book or something like that that they could share with these kids to show them to sort of validate their feelings as siblings and show them that they weren't alone. So my mom mentioned this to me cause I always loved writing and was doing a bunch of different volunteer projects where I would write and read to kids. So she said, Why don't you just make something?

(01:42):

What if you make a little children's book to share with the kids? And that was really the original birth of the book. I wrote just a quick draft and then I spoke with some of the people at the agency to get feedback on what types of issues were most common with the kids they were seeing. So I kind of edited the draft with them and then had a friend do the illustrations and that was the original draft for several years, just headed bound at Kinko's and it was a very DIY project this past year. I just remembered that I had this, I had been thinking about it for a long time and assumed that somebody else must have done this in a bigger real or way by now. But when I looked on Amazon I saw there really are not a lot of resources still for siblings who have a brother or sister with a disability.

(02:35):

And so I was able to get the book published for real, did a couple of edits to make it look more modern and bring it up to speed. But really the bulk of the content has remained the same, the illustrations are the same. And yeah, now I also created a podcast to go with it because I found as I was taking the book around that there is really a huge desire for more resources on how to help siblings and not a lot out there. And what is out there is hard to find. So the goal of the podcast is to both be a resource and create some new information by interviewing psychologists and researchers and bringing some of that information to the forefront as well as directing parents to what other programs they can look for and what else they can do to really guide them as they're raising their special siblings.

Marsh Naidoo (03:31):

I'm super excited about you launching your podcast because I think that is a awesome medium for people to get the information as quick as possible on the go. It is a awesome resource to educate with. I commend you on that. Well done.

Jessica Leving (03:48):

Thank you.

Marsh Naidoo (03:51):

Now Jessica Drake box is in a similar situation as you. He has four sisters, so I'm gonna let you guys go back and forth to talk about some of the feedings that arise with having a sibling with special need. I'm gonna hand over to Drake.

Drake Box (04:11):

How are you doing?

Jessica Leving (04:12):

Good, how about you?

Drake Box (04:13):

Doing pretty good. So I know you basically know nothing about me, but I'm Drake Box, as she said. I have cerebral palsy, a moderate case and that's really allowed me to become a mouthpiece for the kids that have the same disability that I have just at a more severe level. So I just try to be that voice for them when they can't express their feelings or the pain that they go through or just the daily trials and tribulations that they face that nobody will really understand. So I'm just trying to be that voice.

Jessica Leving (04:49):

Awesome. And then you have four sisters

Drake Box (04:52):

<laugh>. Yeah, it's pretty crazy. I'm also adopted, they purposely brought me into a house with four the women <laugh> survive which I have so far. So apparently my sisters have begged for a brother because my parents had four girls and they were just like, You know what, you were just gonna make sure that this is the boy this time. So they went to Ukraine. So they brought me home and my sisters was like, Oh my god, we have a boy now so we're gonna dress him up as a girl. So that's what they did <laugh> when I first got home and now that I look at it, it's kind of ironic cuz you be for a brother and I basically, I was a big baby doll for them <affirmative> until I was old enough to run away.

Marsh Naidoo (05:32):

Jessica, you described some of the feelings that siblings go through. Can you elaborate on that piece?

Jessica Leving (05:41):

Sure. Yeah. Well it's funny cuz actually talking about the sisters using you as a baby doll, that actually, I think part of that is typical in all families. I remember doing the same thing myself with my brother when he was born. I was so excited to be the mini mom pushing him in the stroller and I wanted to babysit and be a mini caretaker. But I think one of the things that can be challenging too is that then as we got older it was sort of hard to really have that boundary between what's like fun, what's me playing around? He's my baby doll because that's entertaining <laugh> versus when is it actually me feeling like it was my responsibility to take care of him beyond a normal sibling role. And I think a lot of kids can feel that way, especially when, and this is one of the things that I have been trained to get a lot of feedback from psychologists that I've been interviewing on because I don't think there's an easy answer because parents can really feed into that.

(06:44):

They see you taking care of your sibling and they praise you and it becomes this chain of oh wow, you're so good at taking care of your little brother, you're help your mom so much, what would you do without you? And that feels like exciting to hear. And then you sort start to thrive on that praise and you wanna take care of them more and more. But then it can hit a point where you don't really know when to pull back or you don't have the skills or don't know if it'll be safe or to say, You know what, mom, can you take him back please? I just wanna go to my room <laugh>. And to really be able to be a kid instead of be that more like parentified adult. And then certainly I think that can carry on as kids get older and there becomes in a lot of families it's just kids don't know what's gonna happen to their sibling when they're older if they can't take care of themselves.

(07:36):

And a lot of times it falls on siblings to literally physically be the caregivers as their parents' age. And I think across the lifespan those concerns become different. Cuz for kids a lot of it's more emotional. We're dealing with are there feelings validated? Are they able to be kids are they really getting to have individual independent identities outside of their sibling? And then versus as they get older, are they having support for care taking roles? Are they knowing what services they can access? Are they assuming that they have to live with their sibling when maybe there are other options or really the issues change very much by age, but a lot of them are similar to, I'm in a Facebook group called SIBNET, which I definitely recommend to all siblings who have a brother sister with a disability. It really, a lot of siblings talk about having anxiety as they get older because there's a fear of what's gonna happen.

(08:35):

And a lot of this is dependent also on what kind of disability the sibling has. I think especially with autism my brother has a lot of the time it's a fear of well what's gonna set him off and there's gonna be a meltdown in public or what's gonna be something that suddenly like he is in pain or upset or they don't have the right food and it's just the end of the world. And then you're sort navigating worrying about is he okay worrying about what are other people thinking? This is the middle of the grocery store, you're like maybe embarrassed. It's just a lot going on for kids to process and it can have effect later in life as you maybe become need to control the details all the time or are constantly worried about when it's all gonna hit the fan. Yeah. So that's kinda a long answer to your question, but many different kinds of issues I think across the lifespan

Marsh Naidoo (09:26):

In terms of a parent I just have Kellan. So I could imagine the challenge that they must be when you have multiple kids. How did your parents approach that, Jessica? What is your interpretation of how they approached you and then how they approached Billy? What was the difference that you saw?

Jessica Leving (09:50):

I think for starters, they did a great job before my brother was even diagnosed. I think just when my mom was pregnant there was a lot of setup around, we're so excited that you get to be a big sister. Yay. There was a lot of really trying to make me excited about that role instead of, I think there was the worry about is the baby gonna take all the attention away or whatever. And they wanted me to feel like they were just as excited for me to have a new role in the family too. So there was a lot of that that was really positive. But then of course it can get difficult as things just play out naturally to know when you can say, you know, are more than just being a sister, you are also a person who likes writing and a person who wants to go to dance class or you know can be more than just what you are in relation to your brother.

(10:40):

And then I think in terms of how they related to both of us, it really was very dependent on our personalities. And I think one of the things I've talked about in other interviews too is this idea that I didn't really realize some of the ways that things were affecting me until I was much older As a kid he did get a lot of special privileges and I think because of having autism, there were a lot of roles that were different that didn't apply to him. I would always get in trouble if I left the light in my room when I wasn't in the room whole. Do you work for the electric company thing? <laugh>, whatever.

Marsh Naidoo (11:18):

Hey, I just had that conversation this morning. <laugh>.

Jessica Leving (11:22):

Yeah, I mean it doesn't go away just with kids. I feel like between people who are married, there's always these different opinions about how the lights should be left. But I just remember I would always get in trouble for that. And then my brother, my brother's lights were just on constantly and he had a TV in his room and the TV was on constantly. Cause he very, it would calm him a lot to be able to have his different shows on different screens all going at the same time. And oh my gosh, if they were worried about my light for 20 minutes being on causing an electric bill, he had the light, the computer, the tablet, the phone, everything. And I don't think as a kid I was really that resentful about it because I understood, of course I'm older, I understood why he gets different experiences, but I don't think there was as much of an opportunity as there could have been to get to process as a kid.

(12:16):

I know this feels unfair. It's okay that it feels unfair and just a lot of this is about just validating emotions. It doesn't mean anything's gonna change, it doesn't mean that I get to have a TV in my room that's on all the time too because that it's not everything in life is fair. But to be able to have the opportunity to talk about it and just feel seen, to have a parent acknowledge like, hey, sorry, I know that that might not be super fair for you and maybe instead you can go get ice cream or something I think would've meant a lot. But like you said, it's difficult with multiple kids. I can't imagine with five certainly. Yeah, it's hard. Not everybody gets to be treated completely equally. Not everybody gets a full separate but equal amount of attention. But certainly as much as parents can strive to do that, it's helpful.

Marsh Naidoo (13:04):

You're right, siblings need to be validated, their feelings need to be validated. And that acknowledgement, what does that kind of acknowledgement do you think, Jessica?

Jessica Leving (13:17):

So I think it just gives us space to feel like it's okay to have unpleasant emotions, which is really a life skill that we need as adults. And I think everybody's personality is different, but for myself, I love my brother. I always was dotting on him and so I wouldn't have allowed myself to feel resentful at the time. I think I was always just immediately going to, oh well that's okay, that makes sense because he has autism. Or of course my parents aren't gonna come to my class event tonight because my brother has therapy. I just wouldn't even allow myself to be mad about it or acknowledge or I didn't even know that maybe I was feeling like, oh that's a bear, I'm jealous or whatever. Because it just became really natural to just shove those feelings down and didn't come out until 10 years later in therapy looking back and realizing I don't think I know how to be mad.

(14:14):

And it discovered that even in my personal relationships as an adult, I had become this really cheerful, optimistic person all the time. And then would sort be quietly, passively aggressive if I wasn't happy about something because I never learned how to say or even to acknowledge within myself that really that situation made me angry. I'm upset, I need to go take a minute to decompress in my room and then get over it and then move on. I didn't learn how to do that and I didn't learn how to say to my parents, Hey get when my brother gets special privileges, I'm not jealous. I'm just saying that's unfair. That just like, Hey guys, I didn't feel comfortable doing that or even really realize that maybe it would've made me feel better. And I think when kids are given those opportunities to stop and pause and reflect and look at what their feelings are, it just sets them up to be healthier adults that are able to experience a full range of emotions in a healthy way.

Drake Box (15:18):

I think it really depends on the type of perspective that either me being the kid with a disability even though it's not that severe or whatnot and I have it to acknowledge it stuff to live with it. But all depends for me, it depends on the perspective that you have at a very young age. So by your parents telling you, okay, setting you up for that role of a big sister rather than telling you, all right, well we're not gonna be able to pay much attention to you because there's another kid coming. But by them setting you up by getting you ready for a more, making you feel like you had a more valuable role that gave you that perspective, Okay, he's important to me, I gotta make sure he's fine, I gotta make sure he's good. Everything about him is good, he's happy, he's comfortable and then I worry about me.

(16:07):

So I feel like me and you kind of share that perspective and my sense of the thing is I don't want people to worry about me because I try not to let my cerebral palsy affect my day to day life in as many ways as possible. I didn't want them to treat me any different, look at me any different and go easy on me. Just because I have this doesn't mean I can't help her out on house. I can't clean. But I feel like perspective plays a big role in it because as long as you have a positive perspective on life, positive outcomes are sure to follow, it's you gotta have that good mindset, that good perspective and you always have to look for the positive even in the most negative situations. Yeah, <affirmative>

Jessica Leving (16:51):

Absolutely. And that just reminded me of a few things too. The other day was on the phone doing another, an nterview for my upcoming podcast and we were talking about how we're just at the forefront. There's so little research being done on siblings and then it also, there's almost no research being done on how the person with the disability feels about their sibling. They're typical developing sibling and for instance, this example of the sibling growing the person without the disability growing up and thinking, oh I'm gonna have to live with my sibling when we're older. Well your brother or sister might not wanna live with you. The person with the disability might have absolutely no intention of being your roommate just and who are you to have just assumed, oh they're gonna need me to take care of them when they could have a lot of different ideas in mind.

(17:45):

And then that, I think the other piece there is this idea of by setting up, I think a lot of times our society, especially lately can air on the side of being overly positive in a way that is really, really well intended. But if it leads to this idea that oh I need to always be taking care of my brother with a disability or oh we always need to be extra nice and go easy on people with disabilities, that doesn't really allow you to be seen as a full person and that's not fair either. And I don't think that's healthy for sibling relationships. And one of the things I talk about all the time is that me and my brother argue and cause I know him and I know when he's being a punk and the same way he knows when I'm being obnoxious too and it wouldn't be a healthy relationship if I just all the time let him have everything he wants because so poor him, he has autism. Like no, we're siblings and we know how to push each other's buttons and that's just part of normal sibling life.

Marsh Naidoo (18:45):

You hear a lot now about parents making time for the siblings that are typically developing. Was that a situation in your case? Did you have Jessica time where it was just maybe you and your mom or you and your dad together?

Jessica Leving (19:06):

I think my parents did try to do that as much as possible but certainly I think there's more of a talked about focus on that now, which is really, really welcome because I think that's huge. This idea of making sure that there is dedicated time for each sibling to have one on one parent time and to know that it's not gonna be interrupted. I think my mom in particular did frequently try and make space for just the two of us to have girls night or go do something fun. But there were occasional times when that would get interrupted because my brother would need something or there would be a call from the house or we'd be home and he'd be in the other room and suddenly have a need. And some of that you just can't get around. It can't be avoided cuz as parents we need to, there's a need to triage and take care of whoever needs you the most.

(19:57):

But I do think if whenever possible, if there's a second parent that can be on taking care of one kid while the other parent is with the other for uninterrupted time or if you have a respite worker that can come someone actually just suggested that one way to do it is to pull kids out of school <laugh>. That you could pick your neurotypical kid up early from school and take them out to lunch or something because you'll know that the other kids are in school and you're hopefully not gonna get interrupted then. So whatever you can do to make sure that that time really is dedicated Jessica time or March time, whoever the case may be I think is really important.

Drake Box (20:42):

Having four other siblings plus yourself and only two parents, it's kind of tough to make that time for that parent. So I didn't have the privilege of always being able to just go and be with my mom or my dad just by myself, do whatever we wanna do because got four other girls that they need. They love and affection and tension and makeup and all that good stuff, <laugh>. But my dad did a good my dad, well first of all I'm a momma's boy at heart, let's just get that out the way. But my dad did a really good job of, he'd wake me up early in the morning and we'd go and to auctions or antique picking or whatnot and we just do that. But that would just be our thing. That's what we would do. The girls would never wanna come so we wouldn't have to worry about it being interrupted.

(21:36):

My mom would never come cuz it's early in the morning, she like to sleep. But I feel like it's very important for a kid in general to have that one-on-one connection and be able to make memories with their parents. Not always have another kid or another sibling right next to 'em. Being that I'm able to recall all those memories and have that one-on-one connection with my dad and say that we did this one thing, it was just us. I feel like it's important for that development to be able to socialize with somebody and not depend on other people being there that you can bounce off. So it also, I mean not only did it help with the whole affection and love thing, it's a life skill that we were able to learn, to be able to socialize with people that were older than us one-on-one and not feel awkward or uncomfortable if we didn't have somebody there to bounce off.

Jessica Leving (22:28):

<affirmative>. Thank you. Yeah, I think that's a great point and I think that's really true in all families. And I have a friend who is one of, I think seven, and I don't think any of them have any very significant disabilities that I know of, but I know that even for them they had, their mom would set up once a month that each one of them could get a mom date and make sure, Cause I think all of us want time with our parents one on one and to be able to, you're right, interact in a different way. Cause you act very differently around your siblings or your peers than you do when you one-on-one

Marsh Naidoo (23:04):

So I'm interested about Buddy where is,

Jessica Leving (23:08):

So he lives with my mom still about 45 minutes from me. So I get to see them all the time, which is awesome. And he has a job, he works actually at Northwestern, so we're in Chicago so it's not too far from us. And he works in their alumni department doing kind of different administrative tasks and making sure that all of the papers are filed correctly and the coffee materials are stocked and he loves it. He's been there for several years and it's been really, really nice to see. Actually just recently for, I'm probably gonna mess this up cause I don't watch Game of Thrones, but he's a huge Game of Thrones fan and his birthday was right before one of the season premieres or something and they decorated a throne in the style of the movie, a huge throne for him and surprised him with a gift card cuz he didn't have hbo. He was always watching everything afterwards when it came out and they gave him all chipped in to give him a gift card so that he could watch the series live and it premiered and they posted this on Facebook and I just started crying seeing it. It's just been so nice to see him get embraced by a community like that. So yeah, luckily he is doing really well.

Marsh Naidoo (24:25):

Listen, we've actually reached the time where we normally wean our podcast off

Jessica Leving (24:31):

<laugh>,

Marsh Naidoo (24:33):

Trying to keep it around 20 minutes or so. But before we go, please let us know where our listeners can purchase your book and also give us the latest on your podcast.

Jessica Leving (24:48):

Yeah, absolutely. So the website is SupportingSpecialSiblings.com and you can find all of the information on there. The book is available on Amazon, it's called Special Siblings Growing up with a sibling who has special needs. And then the podcasts called the Special Siblings Podcast. It's gonna be premiering with the first episode on January 18th. So coming right up and we actually just posted a trailer, which is now live and you can listen to it on iTunes, SoundCloud, and YouTube. Yeah, but again, supporting special siblings.com is the place to go if you can't remember all of those different things. It's all there.

Marsh Naidoo (25:28):

Well done. And thank you for putting the resource together. This is gonna be highly valuable. Drake, any last words from you sir?

Drake Box (25:37):

It was just really nice meeting you and it's nice to have a different perspective and an intellectual conversation with someone, so appreciate it.

Jessica Leving (25:44):

Yeah, thank you guys so much for having me on the show and it was so nice to meet you, Drake and Marsh. Nice to talk to you again. I know it was a while ago that we spoke, so yeah, I'm so glad you guys had me on. This is fun.

Marsh Naidoo (25:55):

Well guys, this brings us to the end of the podcast. And remember as always, get the chop of that mountain. This is Marsh Naidoo signing off.