A Sibling’s Perspective: Kassandra Conley
Earlier this year, we launched our Sibling Support Initiative. It’s a pilot project to figure out what siblings in our community need and how we can best support them.
A big part of what we did was host a series of virtual sibling support group meetings. At one of the sessions, we invited Kassandra Conley to present to other siblings. Kassandra is a young adult twin sister to a young man who had a hemispherectomy as a baby.
Kassandra shared her journey and advice with our group. She was very open about her relationship with her brother, his challenges, and how they affected her growing up. And there were some great questions from the other siblings in the support group.
Here’s what we talked about:
Audrey Vernick We are thrilled to have Kassandra Conley with us tonight. She’s 20 years old and the twin sister of a young man who had a hemispherectomy as an infant. She will share their journey and hopefully provide some great topics of conversation. We’ll follow that up with a Q&A. So go ahead and take it away, Kassandra.
Kassandra Conley Hello, I’m Kassandra. Today I’m just going to be talking to you guys about my experience of having a sibling with a hemispherectomy.
This is a little bit about me: I’m from Pittsburgh, Pennsylvania, which is all the way in the Northeast, and it’s pretty chilly today – it’s like 50 degrees and raining. So that’s Pittsburgh for ya. I’m 20 years old, and a few of my hobbies are going for walks, trying new restaurants, reading, shopping, cuddling with my cat Murphy (which I have a picture of below), and traveling (there’s a picture of me snorkeling). I go to Westchester University near Philly, and I’m studying to become a speech pathologist.
This is my brother Kody. He’s also 20 years old since we’re twins. I included some pictures, and I’ll explain a little bit.
Some of his hobbies are playing baseball, and he’s a part of our local high school football team – he was the captain, and the picture in the middle is him walking them out during one of the playoff games. It was amazing! My mom ended up missing it because no one said it was gonna happen and we’re kind of bummed out about that, but my dad got to see it, which was nice, so he recorded it and took pictures.
He plays baseball for Miracle League, an organization for kids with special needs. Any kids with special needs can participate. He’s been doing it for 12 years, and there’s a picture of him doing a home run. I think that’s adorable.
Some of the things that he absolutely loves are Christmas trees (we cut down our first Christmas tree last Christmas, and it was like the best thing ever), loud music (we love to go on car rides, put all the windows down, and blast rap music, which is his favorite), school buses (any time you see a school bus, Kody will know – he’ll be pointing “school bus! school bus!”), and SpongeBob (there, he’s decked out in all of his SpongeBob gear that he got for Christmas). And last, he is at one of his dances which he loves.
A little bit about Kody’s journey: at 13 weeks old, Kody had a hemispherectomy. They knew during gestation that something wasn’t quite right. They saw fluid on the brain. They weren’t sure what it was and would know more after birth. It ended up being a little bit worse than they expected. He had over two hundred seizures a day up until 13 weeks when he had his hemispherectomy. He’s been seizure-free since he had the hemispherectomy at 13 weeks old, which is pretty incredible. I know some people still have some seizures after their surgery.
We never got an official diagnosis; it was like, “he has CP, he has hemimegalencephaly, he has all of these things…” Then we did a whole bunch of genetic tests, and he was diagnosed with PROS syndrome, an overgrowth syndrome found in the PIK3CA gene, which is also seen in breast cancer. So the whole right side of his body was overgrown, and it affected his brain the most, causing seizures and causing fluid buildup in the brain. We found out when he was 19, so it took a long, long time to get an official diagnosis of what was actually wrong. But he’s been doing pretty great.
This is a picture of him after probably his biggest surgery, we were about eight or nine years old. He has had 40-plus surgeries from head to toe: eyes, ears, mouth, hands, feet, hips, really everything. So we’ve done a lot, we’ve gone through a lot. His hemispherectomy wasn’t even the biggest surgery that he’s had, but it probably saved his life. It was amazing.
Then this is us as a family. I love all these pictures. We are big on traveling. That’s the main thing that we love to do. We like to go everywhere. Just because Kody’s in a wheelchair, that doesn’t stop us. We are getting on that airplane, we’re getting on that cruise ship, we’re getting on the roller coasters, doing everything, and making sure he’s involved.
If you look at the bottom picture, that’s us with an alligator in Florida because why not? And the top is one of my favorite pictures that was taken in Florida at a Make-A-Wish resort when he was five. We went to Disney World, and it was incredible. Then we went back when we were about 17 or 18 and got that really cool picture of us doing the same pose. I love the one with us with the Hulk and the one right next to that we’re in New York City during the Fourth of July. Some police officers were really nice and let us into an all-access area to watch the fireworks, which was really cool. We’ve done some amazing things. We have a trip coming up; we’re going to Mexico again. We kind of do everything, which is great.
I can go into more detail about his hemispherectomy. It affects his left side; he has no seizures and is in a wheelchair, but most of this wasn’t because of the hemispherectomy and seizures, like him being in a wheelchair and having limited mobility as speech delays. Those are more from the PROS syndrome.
Kids will get [a hemispherectomy] for different types of seizure disorders, but this wasn’t a seizure disorder. It’s nice because there’s a very small group of us within the hemispherectomy community that has something besides a seizure disorder that causes a hemispherectomy, whether that be a genetic mutation like the overgrowth syndrome or something like that. Only about six of us across the U.S. didn’t have Rasmussen’s or something, so it’s a nice, little, close community. We met all of them through The Brain Recovery Project, most of them in Baltimore, and then some more in Cleveland. We all keep in touch over Facebook and it’s lovely.
Audrey Vernick Thank you, Kassandra. It’s great to get the overview. I love the pictures. I want to just throw it out to the audience: if anyone has any questions, you can unmute to ask your question, or you can ask through the chat. So I’ll just pause here and see if anyone has any questions. If not, I have some questions I can ask.
Question (sibling): I have a question. My sister had a left temporal lobectomy. I’m only 14, and when my sister had her surgery, I was ten, so I am still learning. But what part of the brain does that affect? Because I’m not super educated on it… I was just wondering.
Kassandra Conley I’m not 100% sure. My brother had a partial hemispherectomy, so his wasn’t actually taking out the full half of the brain, they just took out a small section that was causing most of the seizures. So I know there are many different kinds of surgeries; some take out a full portion of the brain, some… I don’t know all of it. I’m not a doctor. I’d love to learn more.
Audrey Vernick I’m happy to give you some information about that. One of the things that I do through our organization is training for school teams, where I help the team understand all the functional outcomes of different surgeries. I have slideshows, so if you as a group want that – or I could even do it more tailored individually, I’m happy to talk to you more about temporal lobectomy. The main thing is that it houses the auditory cortex, where we process sound. We think that we hear with our ears, but we actually hear with our brain; we see with our brain. All these things happen in the brain even though we have these receptors: the eyes, the ears, and whatnot.
An impact is an auditory processing disorder when the temporal lobe is damaged, disconnected, or removed. It’s anatomically impossible not to have auditory processing disorder after impacting the temporal lobe in that way. So if it’s a hemispherectomy, the temporal lobe is also affected. Even a corpus callosotomy – where they disconnect the two halves of the brain – involves the interhemispheric transfer of language, the ability to have language crossover. In a typical brain, language goes back and forth a lot. I’m happy to talk more about that if you have more questions. We could do a one-on-one session, I can show you some slides and talk you through them, or if anyone else is interested, I’m happy to do that for the group.
But that leads me to a question for you, Kassandra: how did you learn about your brother’s condition? Was it a process over time? Did you feel at some point that you were ready to dive in and learn more about it? Were there times you felt, “I don’t want to know about this,” and how did that evolve for you?
Kassandra Conley I’d say recently, within the past few years since he got his diagnosis of PROS, my whole family just got super involved in learning about everything that he went through, his surgeries, and his diagnosis. We’ve been seeing a lot of different doctors to learn more. Personally, I’ve done a lot of research about hemispherectomy and how it affects the brain and how it affects him. He does have hearing loss, vision loss, processing – he has all of it. So I was just looking it up to see like, “oh yeah, he has this and so this is why he has that.” That’s helped a lot, especially with the internet at my fingertips. I can Google any questions that I have, and it’s great.
Question (siblings): How did you cope with the problems that your brother had?
Kassandra Conley That’s a really good question. As I grew up, my coping skills became very different. As a child, I would act out as a form of attention, whether it be negative or positive attention. I went towards the negative attention at home and the positive attention at school, just excelling in my academics and then throwing temper tantrums at home (at ten years old, which isn’t common to see). That was when I was younger.
Now, I’d say from high school on, my family and I will talk about it. If my brother is having surgery, we talk about what’s going on. We spoke to him about it. I ask him questions; he can kind of answer. Now it’s not so much that I cope with it; it’s more just part of my life.
I don’t want to say it doesn’t affect me because it affects me, but it’s not like when I was younger when it affected me a lot. I had anxiety, especially thinking, “Oh, he’s going into surgery. What if he doesn’t wake up?” That thought is still in the back of my brain, all those kinds of thoughts, but it doesn’t take over. In a way, you become used to it; this is your life, just living with it for so long. It’s like, “yeah, he’s having another surgery,” or, “yeah, he’s going to therapy.” It definitely becomes easier as you get older.
Question (sibling): At what point did you decide that you wanted to be a speech pathologist?
Kassandra Conley I wouldn’t say that speech pathology was the first thing I went to. Ever since I was little, I have wanted to be in the medical field because that’s what I was used to. I was in the hospital all the time, I saw him with his therapists, it was basically like a second home. I thought, “I’m pretty comfortable here, I might as well get paid to do all this fun stuff.” I was looking through my options: nursing – I don’t really want to do it. Doctor? Too much school. I don’t even know if I could do it. Then I was like, therapies, okay, there’s like PT, OT, speech… I love all of those. Then I really got into speech because he has a cleft palate. I don’t understand exactly, I read his documentation and it doesn’t make complete sense, but the air gets stuck in the roof of his mouth and he has trouble getting it out. I was like, “Oh, that’s interesting.” I started doing research on it and talking to his doctors, and I was like, “that’s what I want to do for the rest of my life.” And I landed on speech pathology.
Audrey Vernick That’s very cool. So you were inspired by him?
Kassandra Conley Oh, definitely. Yeah.
Question: How many surgeries did your brother have?
Kassandra Conley I think we’re at the higher end of 40… I know it sounds bad that we don’t know the exact number, but sometimes he’ll have surgery, and since he’s already under anesthesia, they’ll do other things. Like he recently got his ear done, and then they did his mouth and an MRI. So roughly 47 or 48 surgeries.
Audrey Vernick Tell me a little bit about your relationship with your brother – what are the special things that you have in common or what have you bonded over?
Kassandra Conley So it’s just me and my brother. We don’t have any other siblings so he is literally my best friend. I take him everywhere. We have an adapted vehicle. It’s not a van, it’s an SUV, so it’s really easy to take him. I just put him in his power chair and we go wherever we want. Now that I can drive, we literally will just leave. We won’t tell my mom. We’ll go to Target, we’ll go out to eat. We just hang out all the time.
When we were younger, we fought all the time and we got each other in trouble. I made my parents put him on timeout all the time because I was like, “if I have to get timeout he has to get timeout, that’s not fair.” And we would butt heads, we still butt heads, and my mom’s always like, “stop it!” I’m like, “Well, you fight with your siblings. Why can’t I fight with my sibling?” And it’s so great. I love having him as a brother.
Audrey Vernick That’s awesome. You have had to help take care of him over your lifetime. How has that empowered you, and also how do you set boundaries so that you don’t do too much and you keep your sense of self?
Kassandra Conley Growing up, my parents never really made me take care of him, which was nice. They were like, “he’s your brother, you don’t have to take care of him.” As I started getting older I wanted to help take care of him. He is my brother. I feel like he would help me if I needed it, so I want to help him. Now we’re at the point where I will shower him, I will change his diaper, and I’ll feed him dinner. I’m kind of like his caretaker, all that fun stuff. But it’s always been because I wanted todo it – my parents never forced me to do any of that. They don’t want me to be an extra parent, they want me to be a sibling.
Communication was key with that. I very gradually would start doing more things to help them. As a kid, I was just like, “oh, I want to help. I want to do this.” My parents were very strict, like, “no, he’s your brother, we’re the parents, we will take care of him. You do your kid stuff, we’ll do the parent stuff.” Then eventually they let me help. And he’s okay with it too, which is the most important part.
Audrey Vernick That’s great. So it sounds like you really had the space to come at it from the place you wanted to and you weren’t pushed into it.
One of the things that has come up in our sibling pilot group is being part of the decision-making process and knowing what’s going on and how important that is for the siblings. Did your parents keep you informed of what was going on at various stages? I’m sure that’s evolved as you’ve gotten older. Have you been part of the decision-making process, or how do you advocate for being involved?
Kassandra Conley Growing up, my parents told me what was going on. I clearly wasn’t a part of the decision process because I didn’t really have the capability. But now it’s to the point where they truly value my opinion and they’ll come to ask me questions.
He’s 20. He has one more year of school and then he’ll be attending an adult day program. It’s been me and my mom touring programs, looking at different things, and she asks me, “Do you think he will like this? Do you think he will be okay with going here?” They’ve come to the point where they value my opinion and realize that sometimes I know him better than they know him because he acts differently with me than with our parents. I think that’s nice.
But it hasn’t always been like that. There have been times like, “Wait, you didn’t tell me he’s having surgery!?” because they’re so used to everything, like, “oh, yeah, we do have to mention that he is going to have surgery maybe a couple of weeks in advance before he has it.” It’s definitely happened a couple of times. But we all get along, we’ve grown together, we know what each other wants to know and what cannot be talked about if need be. We have a very good family dynamic.
Audrey Vernick That’s great.
Looking back on it all, it sounds like right now you’re in a good place with all of this, but did you ever experience issues with your brother being teased or being out in public and having people staring? What were your challenges in social situations, and how did you handle that?
Kassandra Conley There was never really teasing because he went to a special needs school, and I went to a mainstream school. The only people who knew about my brother were friends who would come to the house. He’s easy to get along with, so they would all love him, and I would be like, “Hey, like you’re here for me, not for my brother!” But that was good.
In public, he’s in a wheelchair, a big, loud, power chair. We get stares sometimes. We’ve had kids come up and say, “Oh, why does he look like that? What’s wrong with him?” and their parents look mortified. We’re like, “Thank you for asking; you’re four; you’re gonna be curious.” So we’ll explain to little kids, “oh, he can’t walk, blah, blah, blah.” But when the adults are staring and making dirty looks, it’s definitely harder. If they’ve been staring for a while, we’ll say something like, “Hey, he can’t walk. He’s in a wheelchair.” You don’t know if they’ve maybe never seen someone in a wheelchair, so we try to educate the best we can.
I’d say if I were in a situation with bullying, I would just confront them and say, “Hey, it’s not something we can control. This is my brother. I love him. He’s great. Why don’t you talk to him? Maybe you’ll love him too.” I’m very lucky that I didn’t have to deal with bullying, but we try to educate everyone if they seem curious.
Audrey Vernick Is he able to communicate with you? Like, do you guys have a means of communication? Can he talk to you?
Kassandra Conley Yes, he can talk, but because of his cleft palate, he’s kind of hard to understand. We can understand him just fine, but you might not be able to understand him, and he does get frustrated with that. But yeah, he can clearly communicate whatever he needs.
Audrey Vernick Has he ever talked to you about what it’s like to be in those situations where people are making him feel uncomfortable, or do you or your family feel uncomfortable? Has he ever mentioned anything about that?
Kassandra Conley I don’t really think he has the understanding.
Audrey Vernick That’s kind of a blessing.
Kassandra Conley Yeah, he’ll just smile and wave.
Audrey Vernick So you’ve been through a lot, you and your family – a lot of surgeries, a lot has happened. What is the situation that you think you’ve struggled with the most? Social, hospitalizations, peers, his peers, your parents? What strategies did you use in those situations?
Kassandra Conley Definitely hospitalizations. When I was younger, seeing him after surgery was hard. We don’t have a lot of family around here, so I was there either before surgery, after surgery, all that kind of stuff.
Seeing him in pain, like after the surgery where he was in that really big cast, he would scream in so much pain, and it was horrifying to watch any time they had to change his diaper or move him in it. Honestly, that scarred me a little bit as a child. You don’t want to see a family member like that at all.
Since it’s just me and him, I guess I kind of mourn having a normal sibling, being able to be an aunt, and him having a wedding. My family talks about that because it’s hard. It’s kind of like being an only child in a way because when I got a car, he didn’t get a car; when I had this type of party and reached these milestones, he didn’t reach these milestones. I’d say that is one of the biggest things.
Audrey Vernick Yeah, yeah, I can see that.
What are your fears and worries about your sibling either now in the present or in the future?
Kassandra Conley So like I said, we’re at the age he’s going to be transitioning to an adult day program soon. His school is absolutely amazing, and his teachers are amazing. He’s been there for so long. Everybody knows him; everyone is great there. It’s that point of transitioning him over into the real world; he’s not going to be in school anymore. How is he going to react to that? And then eventually, down the road, when my parents can’t take care of him anymore – we’re the same age, and I’ll have to be taking care of him. So it’s gonna be trying to find a husband that’s okay with that, and having kids may be being postponed. It’s so many things that normal siblings would never have to think about. But I don’t want him going into a home. I want him to be with me. So when I have to buy a house, will I have to buy a house with adaptations? It’s stuff you would never cross your mind. I’m only 20, and I think about all this stuff in the future and it’s kind of terrifying.
Audrey Vernick Is this something you’ve just started thinking about recently, or have you been thinking about this for a long time? What the future holds?
Kassandra Conley The thought has always been there since I was probably a teenager, but now it’s since he’s graduating, it’s becoming more real. And as we’re getting older, I’m like, “well, when I’m 60, he’s going to be 60. So what do we do then?”
Audrey Vernick We do have some transition resources that we’ve created that I’m happy to share with you, just thinking about that long-term planning. There are definitely some resources out there and I’m happy to connect you with those.
When you were talking about the police giving you the front-row seat on the Fourth of July it reminded me of how in our family we talk about what we call “disability perks” – things that you get because you have a sibling with a disability that you wouldn’t otherwise get. Are there other things that you have in your family where you’re like, “Oh, this is so great. We get to do this because we have a person with a disability in our family.” For us, it’s parking, no lines at Disney, that kind of thing.
Kassandra Conley That’s the main one – the no lines at Disneyworld is absolutely amazing. We just went a few years back and we were with my cousins, my aunt, and uncle, and all 10 of us got to do the Fastpass, which was incredible. We have a local theme park called Kennywood where you don’t even have to go in at a certain time, you just show up, and you get to skip the whole line, which is incredible.
There have been so many opportunities that I probably can’t even name all of them. We’ve been able to do so many things just because people are nice, and sometimes they’ll happen at the spur of the moment, like with the police officers just letting us up, which was great. Sometimes we’ll be like, “Oh, thank God we have Cody because we didn’t have to do that, or we got to skip this, and we got front row seats to this,” and it’s so awesome sometimes.
Audrey Vernick I think it’s important sometimes to remember the benefits too, right?
Kassandra Conley Yeah, I always tell my friends, “I’m never going to Kennywood with you because I can’t wait in that line. I’ve never had to wait in a line before!”
Audrey Vernick What do you think the most important takeaway is? If you could leave our group with something, what do you want to leave our siblings with tonight?
Kassandra Conley I’d say to talk to your family. I didn’t tell my family how I felt growing up with Kody and how I felt as a child until I was 15 or 16. I finally said, “I had a lot of trouble going up. I still kind of think about it. And I need to talk to somebody about it.” They sat down and listened, they told me their perspective, how they had trouble as parents, and were sorry that they couldn’t give me everything that I may have wanted because he had to be in the hospital or he had to go to therapy. Being able to talk to them and say our situation isn’t normal and we all need to understand where each other is coming from and how we all feel about it. And you just let it out sometimes. That is very important. Once we were on the same page that growing up was hard for literally all of us, it was like, “Okay, now what are we going to do to make it better as a family, to feel better together?” Now we’re all thriving with Kody. It was a very tough conversation to have, I will say that, but getting it out in the open and now we can talk about all this stuff was really nice.
Audrey Vernick One of the things you and I chatted about when we had our phone call was about feeling angry and alone and how hard it is. What do you think about that at this point, about your feelings of anger and frustration?
Kassandra Conley Growing up, I definitely had a lot of anger. When he had that really big surgery and he was in that double cast, the diaper cast, I had to quit basketball because there was no one to take me. There were so many things I couldn’t do as a kid, and that was hard for my friends to understand. My parents didn’t understand because they were like, “well we have to do this for him.” And the stuff I got to do was kind of like extracurriculars so they weren’t putting that at the top of their priority list. It was very hard. I just sat with that for a very long time until I talked to them and said, “I didn’t really like this. And I wish I got to do these things growing up.”
I’d say there’s not a lot of anger there anymore. We were all doing the best we could in the situation that was given to us. None of us expected this to happen. There’s no one to teach you how to be a parent, and there’s no one to teach you how to be a special needs parent. It was rough and we got through it the best we could – we probably could have done it better, but so be it. Now there’s really no anger, not anymore, but there was
Audrey Vernick Those are the questions I have so I’ll throw it back out to the group. Maybe this generated some other ideas, or if anyone even wants to share any thoughts that have come up for you as we’ve talked tonight?
Kassandra Conley I’d say if you are having any feelings of anger, or frustration, or just generally being upset with the situation, talking to your parents is the main thing. Also, you guys are in a support group now, so just trying to find other people that can understand you. Your parents will have a different perspective than you, and your siblings might even have a different perspective. Now in this day and age, there’s social media, and there are all these support groups.
Get out there and tell people how you truly are feeling. If it’s always, “Yeah, my sibling is great. I love my sibling. It’s all rainbows and butterflies,” but deep down it isn’t, you need to let that out – whether it be talking to a therapist (which is amazing they’ll just listen to anything you have to say and you can talk about anyone you want, which is fun) or friends. Really just anyone. I know even my parents who didn’t completely get it and they’re like, “Oh, how could you be angry? He’s your brother.” I can’t really help it. It’s psychology.
Audrey Vernick When we spoke earlier, you were talking about how whatever feeling you have it’s 100% okay to have that feeling because this is not a typical path. The challenges you are all facing as siblings (or us as parents of children with significant disabilities), there’s no roadmap, no manual on how to do this. So whatever comes up, it’s okay. I love the suggestion of finding a way to process it.
One of the things we’ve discussed in our sibling support group is coping strategies we can use in the moment. Dr. Smith has given us some great suggestions, things like when you’re stressed, and how to center yourself. We talked about the locus of control: what’s in your body, what you can control, and what you’re empowered to do, versus what’s happening to you – how you view yourself. Some of those things have been really helpful. Talking to a therapist, having a support group, there are lots of ways – even if it’s not one thing that works, it might be many different things.
Thank you for sharing your story. It’s so important for the siblings to have a view a little further out. I think it’s nice that you’re an adult but you’re not a parent. Maybe we’ll have you back at another session in the future?
Kassandra Conley That would be great.
Audrey Vernick Thank you, and thank you all for joining us tonight.
(We are happy to share a transcript of this conversation.)