Sebrina Harrell: A glimpse into the life of a SKDEAS teenager, including managing seizures and impacts on the parents

Sebrina Harrell is a supermom to 17-year-old John, who has two rare diagnoses - including Skraban-Deardoff Syndrome.  Sebrina walks us through how John is impacted and what it means for his daily life.  I peppered her with tons of questions, and she gives great insight into managing seizures, handling certain behaviors and overall development.   I found it fascinating to hear her discuss John's journey as he gets older and how it impacts the lives of the parents as well.

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Transcript

PODCAST INTRODUCTION: EMILY: This is Emily Beauclair and you're listening to the Smiles Included podcast, navigating through life with our rare disease superheroes. 

Hi everybody. I have a great podcast today. Sebrina Harrell is joining us. She is a single mom with two teenagers, so you can imagine her life is hectic enough, but then add on the fact that one of her sons has Skraban-Deardorff. I am especially thankful for this episode because Sabrina was lovely enough to answer some questions that I actually received from my audience. So please keep those questions coming. You can always email me or some people reach out via Facebook and especially when we have parents of older kids, they've always been open to answering these questions for us. So without further ado, I went all over the place with this interview and we cover a lot. So here we go. 

INTERVIEW

EMILY: Sebrina, welcome to the show. We're very excited to have you on. I know you have a crazy schedule, so I appreciate you fitting me in. 

SEBRINA: Well, thank you so much for having me. 

EMILY: So tell us a little bit about your family. 

SEBRINA: So I have John and Sam. John is my son that's diagnosed with Skraban-Deardorff Syndrome. And then I have Sam, who is neurotypical. And then we also have two dogs and a cat just to add some excitement to the mix. As far as Sam goes, he plays football, scouts. John was actually in scouts up until we got into boy scouts. He did cub scouts. And then we stay pretty active between school, sports, doctors appointments. Plus, I'm also, I work full time as an HR business partner and I go to school currently, working on my masters. 

EMILY: So you didn't have enough going on. What are you getting a masters in? 

SEBRINA: I actually decided that I wanted to, everyone just automatically assumed I would go back for HR. But I actually decided, I guess, about a year and a half ago that I wanted to do something in social work just because I've had a lot of dealings, not just with John's journey, but with people that I know at the VA and some of the red tape. And I figured the only way I could make a difference in life is to join them. So that's kind of, so I decided to go back for my social work, a masters in social work. And my long term goal is to open up my own clinic for veterans and their families. 

EMILY: Interesting. Do you have a lot of experience with veterans right now? 

SEBRINA: As far as professional, I do not have a lot of experience, but I have a lot of friends that have suffered from PTSD and other mental illnesses. And I've kind of seen what it does to their relationships and their families. And the same goes for any stressor, including, you know, being a parent to a special needs child. There's a different stress that goes along with that. And there's so much red tape and not enough resources. So that's kind of why I decided to do that. 

EMILY: Well, very noble of you. I love to hear that. How old are John and Sam? 

SEBRINA: So John is, he just turned 17 in May and then Sam is 14. 

EMILY: So a bunch of teenagers in the house. And how old was John when he was diagnosed with Skraban-Deardorff? 

SEBRINA: So, he was diagnosed four years ago. So he, let's see, it was November. So he would have been 13 at the time. 

EMILY: Is John impacted by more than just a Skraban-Deardorff diagnosis? 

SEBRINA: So at age two and a half, we went two and a half years without knowing what was wrong. But when John was two and a half, he was actually diagnosed with mito disorder of the complex one and three part of the mitochondrial. John falls into kind of the not as severe category for that, which we're thankful for because with mito, there really isn't much you can do except treat the symptoms until people's body kind of shuts down. And that's kind of how we spent up until he was 13, just kind of preparing for because they did not think that he would have made it as long as he did. So the question, once we turned 13 and we got the Skraban-Deardorff Syndrome diagnosis is how does that play a part into the severity? He had a muscle biopsy, so his mito diagnosis is not really as questionable. It's just which one is the primary diagnosis and no one can seem to answer that at this point because he tends to be on the severe side of Skraban-Deardorff, but on the lighter side of mito. 

EMILY: So that's very confusing. 

SEBRINA: Yes. 

EMILY: So I'm sorry for that. So can you explain a little bit about what John's daily life is like so we can kind of understand how he is impacted? 

SEBRINA: So one of the most notable things with our life is the seizures. So John has had seizures since he was three months old. At times they can be pretty severe. We do not have them under control, so they're usually daily, sometimes two or three a day. But on the bright side is, over the years with some of the medications and surgeries that he's had, they've gotten lighter and they're a lot shorter. Additionally, John does not eat much by mouth, so on a daily basis we're doing tube feeds, things along those lines. He eats for pleasure, things like yogurt, mashed potatoes, stuff like that. 

As far as developmentally for John, cognitively we're about 18 to 24 months old. He plays with his tablet. It's probably his favorite thing. He loves music and he does go to public school and gets therapies. We do private therapies at home as well. So our days stay pretty busy between therapies, doctor's appointments, schooling, and just dancing around the house listening to music. 

EMILY: How do you balance all of this? 

SEBRINA: Very carefully. There's times, I've been very fortunate in my career to have employment that has allowed me to put John and my family first because I'm also a single parent as well and have been for many years. I've made a point that's just allowing me to put things first. I'm very much a schedule person. I get up at 3:30 every morning because that’s when John's overnight feed goes off, I get my head in the right spot for the day and just make my plan, plan my work, and get it done. There's really not a secret other than, because I've shown up to appointments a week early because I wrote it on my calendar wrong. And I'm like I’m so sorry. Luckily the doctors are cool and they're like, let's go ahead and see you since you drive so far. Making sure that you have a support system, which is something that took me a very long time to be like, okay, I do need help. I’m one of those “do it on my own” type of people. So when people would ask, hey, what can I do? Can I bring you dinner? Can I do something for you? I'd be like, no, I've got it. It's cool. And then finally, I was just like, you know, I don't have this. So making sure you have that support system is always crucial. 

EMILY: I think that that's really important. And I'm hoping that you're finally saying yes when somebody offers to make you dinner. 

SEBRINA: Not as often as I probably should, but you know, I'm getting there. I'm a work in progress. 

EMILY: Yeah, because just the simple things can make a big difference when you have so much going on. 

SEBRINA: It really does. 

EMILY: And you mentioned seizures, which are what I find one of the toughest parts of this diagnosis and having multiple a day. Do you have any advice for some of the parents that have this problem? Like, how do you deal with that? 

SEBRINA: So at first, you know, obviously it's just, it was terrifying. 

EMILY: Yeah. 

SEBRINA: But one, always keep a seizure journal just so you can discuss it with the neurologist when you go. That's probably my biggest advice because as children grow, there needs for the medications that their own changes. So if you're not increasing them at the right intervals, you'll definitely see an uptick in those. And the seizure activity. Additionally, I mean really it's just breathe through it because whereas it is very scary and sometimes especially with the larger seizures, children get injured, they quit breathing, things along those lines. And in those situations, make sure that you have a plan and make sure that everyone around you has a plan in the event that you're not with your child. But make sure medicines are on time. Keep that seizure journal and don't be afraid to call the doctors and be like, hey, this isn't working or I'm seeing an uptick in those small ones. And of course, the most terrifying with the smaller seizures like the absence seizures is sometimes we don't even notice from us parents because when John had his last EG, I was thinking, oh, everything's going better. And they're like, yeah, no, it's really not. You're just not noticing them. 

And of course, you know, I'm like, I felt kind of bad because I wasn't. But there's like sometimes seizures can be so quick that you don't notice them. Or for example, we had an issue before VNS because John, in addition to medication, actually has a VNS, which is a vagus nerve stimulator to help, kind of always describe it as like a pacemaker, but for the brain, it kind of keeps everything aligned. And then when he experiences a seizure, we swipe the magnet and it goes off for a minute and a half and breaks up the seizure. 

EMILY: The VNS, now you've answered a question that I've had for quite some time and I've never looked up because we always get that question when we're filling out the seizure paperwork. Our neurologist always clicks no. But now thank you for explaining what that is. 

SEBRINA: Yeah, I mean, the VNS has made a lot of progress because we were having seizures. I thought it was just John falling because we don't work very well. But he did it in the doctor's office one day and the doctors like Sebrina, that's not him just falling. That's an actual, they called it a myoclonic seizure, which then let us know that, hey, we're having a lot more than what I thought. And the VNS has done wonders for that. We don't see any areas. If any of the parents are ever in a situation where you don't see meds working or you've tried a ton of meds and for insurance approval, you do have to go through a lot of meds before you can get that. I highly recommend it, even though we still are having them. They're not as severe and on a regular basis and they have lessened some of them. 

EMILY: I'm honestly fascinated by your son because he's so much older than mine. So I have some questions I didn't prepare you for that are now coming to my head. So feel free to not answer if I make you uncomfortable. Because I would say that my son is around like the 18 to 24 month age too in development. So, and he's four. So I'm just wondering, has your son been there for a long time and like plateaued? That's where he's always been. Or does he kind of improve a little bit each year? How does that work? 

SEBRINA: So for us, and I think a lot of it has to do with the seizure activity. We've actually made progress. For example, at one point, John knew a lot of signs. John gets sick. We had a huge increase in seizure activity and we regressed and we never relearned what we lost. I think a part of it also has to do with the fact that with Skraban-Deardroff and for us, especially there's not good communication skills. I believe that John probably is above that. Cognitively, however, when you can't communicate, It makes you score lower on that. But as far as our progress, that's pretty much where we've been for a while on standardized testing. I always look for the progress that they don't look for. Just like one night out of the blue, we had been saying our nighttime prayers forever and John actually put his hands together for the first time. And that was actually not too long ago. He was about 14, 15 the first time he did that. But we do tend to not make progress as fast as other people. And then when we get sick or see an up to con seizures, we generally lose it. Eventually we get some of it back, but we have not gotten all of it back yet. 

EMILY: And so right now he's not really able to communicate it all other than gestures and sounds. 

SEBRINA: So John has about five words. Home, mama, Grinch, play. I'm sorry, four words. That everyone can understand. And then the rest is gestures. We have tried communication devices, due to fine motor skill issues, they've not been successful. We've tried PECS. And these were things that we started working with him very early on. But he's just never been able to grasp it or the other issues such as the fine motor skills have been a barrier. 

EMILY: Is he doing ABA therapy? I hear this constantly. 

SEBRINA: I do too. We have looked into it. Where we're at, there's not a lot of ABA therapists locally. We have tried some of the concepts. The school has reached some of the concepts. But even with a cause and effect, John doesn't understand that at all. So therefore for us, it's not something the doctors have pushed. Even when I asked, they just don't feel like it's appropriate for him. I like the concept and a lot of people have had a lot of success with it. But I think that for John, the cognitive issues that he has is kind of it, it's why we don't see a lot of progression when we do use those concepts. 

EMILY: It's definitely not for everybody and seems to be a hot topic. But you mentioned he goes to school. Does he go to a regular school? 

SEBRINA: So we do go to public school. We are in an inclusive classroom. Up until this year, it's usually four for his class. He is not allowed to go with the rest of the kids. And the school, it's just their little four in all-inclusive class. This year, there's actually seven children now. He loves school. He loves his teachers and his nurse. But when he was younger, we were able to go to a music class, art class, and things like that with other students as he's grown up, gotten older. And it's not because of his behavior or anything. It's just they don't feel it's safe for him because the other kids in the high school are so much bigger than him. 

EMILY: Yeah. One thing I noticed at the family conference was that he loves Mr. Rogers. 

SEBRINA: He does. 

EMILY: Which was very adorable. What else does he love? 

SEBRINA: So his, by far, the favorite thing he loves is the Grinch. I always say that he loves people that like the Grinch, the reporter on Mr. Rogers, who's his favorite character. That most people would be like, they're kind of the villains, but I guess he just sees them the way God sees them as people, as broken people. So that always makes me smile. But the Grinch, he loves music, he loves to dance. I think if he could actually speak, he'd be singing all the time because he's the one back there humming every time. You know, we're driving to whatever is on the radio. And Curious George is his other one. You probably saw Curious George with us. I'd gotten a scrapbook for John a long time ago. So we have made kind of a scrapbook that's the many adventures of John and Curious George. And it's just where George has traveled with us to different doctors because we've seen doctors in Texas and Atlanta and obviously Cleveland and CHOP. And we've actually been to the other side of Philadelphia to Pittsburgh when we first started out. So George has just been a constant companion. So we have scrapbooks of George being crazy right along with John. 

EMILY: I love that. He seems to have the same sort of social thing that a lot of the kids have where he's just, you know, smiling and happy. 

SEBRINA: He is. He's always happy. He loves to give hugs. Of course, COVID kind of put a damper on that. And then of course, it's always a concern even without COVID when you're out in public. He has this fascination with older people. So he will chase elderly people down in Walmart trying to hug them. And for someone who doesn't move fast on a normal day, if he wants to give someone a hug and doesn't want me to stop him, he can move pretty quick. Where we go to church is a lot of older people and he's in hug heaven. He prefers them to children his own age. 

EMILY: So. And kind of on that topic, does John have any friends that are his own age? I know this is a tough question, but on the last podcast, it was just something that I assumed. I assumed my son would have friends when he grows up. And that might not necessarily be true. He might not be interested in friends. 

SEBRINA: So, and that's really the situation that we're in. And as far as friends go for people his own age, no. And it's a mixture of one: he's not really interested in them himself. And then two: whereas when children are younger, people are more accepting. As children get older, because John used to do Mother's Day out with me where I had friends and we would hang out with their kids. And they would all play. But we eventually reached an age where baseball took over. Well, John can't play baseball and life just takes over. And so that really changed his social interaction. At school, he more hangs with the adults and talks, wants to interact with them versus other children. He doesn't have any issues as far as getting along with people. And for example, they sent a home a note the other day that said, Hey, John was a big help. He, someone lost their shoe, which I was kind of confused about how they lost their shoe at school, but whatever. He helped search the room for it. So it's not that he doesn't like other children. He just doesn't know how to interact with them, I think. And they don't know how to interact with him either. So. Because we did scouts like I said in the beginning, we did scouts for a long time. John actually completed webelos and got his arrow of light. I just decided we would not continue to cub scouts because we couldn't modify it the way it needed to be for him. And the other kids, like they would help John and they would participate in them. But they had been around him for a long time, whereas making new friends just is more of a struggle.

EMILY: Yeah. And actually, somebody gave me that bit of advice. It was like, now that our son is young, get him his friends now and find him close community now. And it's like, well, it's easier said than done because people move and, you know, people get to start baseball and, you know, activities that, that our kids might not be able to join in. So it's, it's very tough. So I was interested to hear your point of view on that. 

SEBRINA: And it, you know, and it is tough and it's tough. I'm going to say this, you know, for the parents, it's tough too. Everyone gets so busy with their own life when the kids get older and they're doing baseball, scouts, basketball, football, the whole nine yards. That you'll find yourself in isolation as well because your child's not developing along with them. I don't believe that any of my friends ever intentionally left me out. Um, but it got to the point that they knew John couldn't do it. So in their own well-meaning way, they excluded us. So I didn't feel bad because watching their kid. So that's something, you know, as parents, we have to be aware of too. I am just now getting in a place where I'm actually socializing and making friends and having, you know, a life outside of John and Sam. 

EMILY: Well, that's nice. I like to hear that. 

SEBRINA: The struggle's real. But, you know, But I finally got in that mindset that I needed, you know, and it may sound selfish, but it's really not. Having something that's outside of what we deal with every day with doctors and insurance companies and meds and seizures and all that. And then, you know, a neurotypical child as well is so crucial just to your mental health because there was a time I felt so isolated and that I just didn't belong. And then I was like, that's just in my head. Just because I have a child with special needs doesn't mean I don't belong with other people. 

EMILY: Agreed. I hope I take that advice when I am struggling as well. You mentioned Sam a few times and, you know, it's him being, you know, neurotypical and having, you know, an older brother with all of these issues. How does Sam deal with that? 

SEBRINA: So I've been very intentional as far as making sure that Sam has his own activities that don't include John, but I'm also very transparent with Sam. Sam has known, you know, from the beginning, you know, that John has, you know, some physical issues. And overall, he deals really well with it. They're kind of at the age now. Now that Sam's 14, that, he just wants John to leave him alone and not bug him. But then it's almost as without any lectures or anything, something makes Sam realize that, hey, I'm the only support my brother has. So then he'll go and, you know, do something silly with John or make John laugh or, you know, go toss a ball outside with John. I think it's helped him be more sensitive to others around him. But it's never his responsibility to do anything with John as far as medical or watching John or even entertaining John. I never ask him to do because I want him to be a child. And so often you hear stories of where you have a child with special needs and a child that doesn't have special needs. They grow up way too quick. And it's important for me for him to experience the same childhood that I would want my children to experience. 

EMILY: And a question that I actually got from a parent that they emailed me that you might be a good person to answer is about sort of the siblings. And it's tough for us to discipline our Skraban-Deardorff child, because at least in my case, like the word no is not necessarily understood. Or if it is, it's ignored. And whereas with my, you know, neurotypical child, they have to know the word no. And they get disciplined a little bit more. And, you know, did that cause any issues in your household? 

SEBRINA: At times, Sam has felt like it's unfair, especially when it comes to like chores and responsibilities. 

EMILY: Yeah. 

SEBRINA: Just like any other siblings, they will get into it. And John will be bugging him. You can't really reason and say, Hey, quit bugging your brother. He's trying to do something. So that's where we've had more of our issue of, you know, instead I have to coach Sam instead of yelling at your brother, let me know, we can, I'll get him out of the room. But of course he wants, you know, him punished just like if he would be. It's just a matter of just kind of explaining the cognitive abilities. And like I just tell Sam, you know, you're held to a higher standard because you understand. John's held to what he understands and you're held to what you understand. As they get older, it gets easier. When they were little, there was really no issues like that. It's just, I've seen that surface a lot as we get into the teenage years. 

EMILY: Yeah. And kind of speaking of the teenage years, some of us with the younger children, they have a lot of behaviors like throwing things and kicking things. Does that change as they get older or do those behaviors still stick with them? 

SEBRINA: So the one thing when John was younger, we didn't have a lot of issues with throwing or kicking. But as he's gotten older, he's definitely more emotional than what he was as a child for us. Between just randomly crying or yelling and having those meltdowns and which I would have much preferred him to have meltdowns when he was younger because I could pick him up and now I pick him up. I don't know how much longer I can do that. So on some levels, I think that it, that part does get easier. But on some levels, there's other concerns because, for example, if your child lays down in the middle of Target at four, you can pick them up easily and walk out the door. When John lays down in the middle of Target because that's our favorite thing to do when we're upset, we'll just lay there. And you can't really pick him up. So then it's more frustrating as a parent because I'm trying to pull him up without hurting him. Everyone's staring. And, you know, of course, you all have those moments that we're like, if you don't get up, I'm going to pop your bottom. Or even though I don't, it's a threat, maybe it'll resonate. And I had someone tell me they're like, you better not do that to that baby. And Sam actually popped up and he's like, you better watch out. She'll pop your seat. So I mean, it's just, it's more embarrassing I think, as you know, at the current age. But does it get a lot better? Absolutely not. At this point.

EMILY: Yeah, great. 

SEBRINA: So we should prepare yourself to develop thick skin and just ignore everyone else that's in stores. And also speaking of this type of tantrums is for us, the mornings are better. I kind of plan my life and my outings with John around when we're at our peak and we're out our peak in the mornings. So determine when your peak is and when they have the most energy and the most well rested. And that's when to go do all that because you have less of a chance of having a tantrum and make sure trips are short and sweet. 

EMILY: So good advice. I do want to talk quickly about the family conference because I know you were at the first one and you were at this most recent one. And just wondering how was the second one different? 

SEBRINA: The second one was different because one: there's a lot, was a lot more people. It was a little, even though it was, you know, we had our issues with timing and everything, there was a lot more information. The first one, there wasn't much information. So I was excited to see the different interests from some of the doctors. Other than Dr. Deardorff and Skraban that were involved because that means that we're growing and people are starting to take notice. 

EMILY: Yeah, we're definitely growing, which I guess is a good thing. 

SEBRINA: It is. And, you know, we're already kind of in the middle of it. But I think the growth and the more people become aware of it and the more funding that we'll be able to get for the foundation, the more we'll be able to figure out kind of where we're going. Because I think that's kind of the hardest part is we don't know what the future holds. And I always tell everyone, you know, John's journey is a little bit different because of the other diagnosis. But I'm very hopeful because you have so many other children that you see that are talking or using communication devices. And I think the more that they discover about Skraban-Deardorff, the better off that we are, that our children will get there and we'll be able to live independently and do the things that everyone else does. 

EMILY: I'm hoping that raising funding and everything that we learn is going to help our kids in their lifetimes. But definitely the people that are coming behind us, it's, I pray that we're making their worlds better. 

SEBRINA: Oh, I know that we definitely are. I mean, just even your podcast or creation of the foundation and the blog and everyone coming together and listening to everyone's stories, it provides hope, it provides, hey, you're not alone in this. And that makes such a difference to people.

EMILY: Yeah, and that's why I love people like you with older children that are willing to give us advice. It's been really helpful. 

SEBRINA: And unfortunately, my advice is the behaviors are still going to be an issue later on. So I know that's not very encouraging.  And I apologize for that. 

EMILY: No, but everything you said, and the thick skin's important. And I feel like I have a thick skin and everything else except for my child. And I think I need to work on that. 

SEBRINA: And that's to be expected. I mean, there are so many times that we have an issue either, he has a meltdown or a seizure. I was really excited when we got our new rescue seizure med that we put up his nose because the Diastat in public was not pleasant and people say stuff and people are just people, can be mean. And I've gotten in the car plenty of times and just cried. And then I'm just like, do I know them? Do I go home with them? And the answer is no. So I just shake it off and focus on the people that support us and love us. 

EMILY: Yeah, you mentioned getting into your car and crying. For some reason, that's like my place. 

SEBRINA: Yes, mine too. 

EMILY: I don't know if there's something about driving in the car. That's where the crying happens the most. 

SEBRINA: Most definitely. 

EMILY: But we will get through this. And you gave so much advice and I really appreciate it. Is there any other advice that you have that I didn't have already earlier in the podcast? 

SEBRINA: So the one thing that I would like to really just encourage everyone because I've hollied out that I'm the only single mother out there. I'm the one I currently know about. And this goes for both single parents and married parents. If you're single, take time for yourself, be it five minutes. Because a lot of times in my world, it's been five minutes that I've had for myself. But for the married parents out there, don't forget to focus on your marriage as well. Because it's so important. It's difficult. It's hard when you have children with special needs. It's hard when you have children, period. But having children with special needs on top of all your other obligations, sometimes relationships come last. And they don't need to be. They need to be a focus of your life as well. 

EMILY: Yeah. There's definitely more single parents out there that have kids with Skraban-Deardorff. And similar advice, sort of has been given. Because right now I am married, but it's tough. Like we fight a lot over our child. And are we paying enough attention or too much attention to him? And it's really tough. So thank you for that advice. 

SEBRINA: It's a really tough balance. But, and that's just not by anything, just saying anything that John affected anything. But at the end of the day, that was the feedback. And I've been divorced for a long time. But that was kind of the feedback I got is that I focused so much on John and advocating for him. That, would I do it all over? Absolutely. I would advocate just as hard. So hopefully if I ever decide to go down that path again, take that and apply the fact that I need to invest just as much in a spouse or a significant other or any of my relationships as I do with John. 

EMILY: Yeah. Yup. Really good advice. 

SEBRINA:I hope something that I've said is helpful to someone. 

EMILY: I know it's gonna be helpful to a lot of people and a lot of people were hoping to hear from you just based on the conference and meeting your son in person. So thank you so much for joining us. 

SEBRINA: Well, thank you and you have a great day. Thank you for having me on here today, Emily. 

PODCAST EXIT

Thanks for listening. I hope you found today's discussion helpful in your rare journey. If there are any other topics you want me to discuss, questions you have for some guests, or if you wanna be a guest in the show yourself, please reach out to me via the email included in the show description. Please also visit skdeas.org to learn more about Skraban-Deardorff Syndrome and consider making a donation to fund research to help our kids. Talk soon.