Siblings of a Sister with Special Needs

What was it like for Sapir and Idan to live with a sister who had special needs? How did it affect them as they grew up? How did their sister's death affect them? What advice do these young adults have for other siblings living with a sibling with special needs? Today's Guests, Sapir and Idan talk to Anna about Liel's special needs (both medical and communication) and how they feel living with her helped mold them into the people they are today.

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Transcript

spk_1:   0:00
Theo

spk_2:   0:05
Theo The 11th season of heart to heart with Anna our theme nous sees in his heart Warrior siblings We have a great show for you today all the way from Israel Today show is siblings of a sister with special needs and our guests are siblings disappear Leven And he'd only been you Don't and Sapir were born in Jerusalem in 1994 in 1996 In almost every way there are a typical brother and sister, but for this they're younger. Sister Li l was born with double outlet right ventricle or D O R V. By age four, she was showing signs of autism and by age 13 she had also developed epilepsy. Quickly Hee dong disappear learned that their lives at home would be different from those of their friends. Both were involved with the day to day care of their sister taking turns being home for her after school making meals before their parents came home and in general, being there to help with whatever was needed. Leo passed away in 2012 at age 15. Today it on at 23 is a veteran of the Israel Army works in a hostel for adults with special needs and studies in Jerusalem. Sapir lives near Tel Aviv and runs an Internet to restore together with her boyfriend, Itai. Welcome to heart to heart with anise Appear

spk_0:   1:22
I on a shuttle. I'm very happy to be here. And thank you for having us.

spk_2:   1:27
Shalom. We will meet Don in the second segment. So we'll start with you, Superior. I'm so excited to have you on the show today. I have had the distinct pleasure of talking with you before with your dad. When you helped do Cem marketing training with us. But this is the first time for you to be on heart, to heart with Anna.

spk_0:   1:46
And I'm very excited.

spk_2:   1:48
Me too. Me too. I want you to start by telling me a little bit about your childhood. Growing up with the sister was such a serious congenital heart defect. How aware were you of Leo's heart problems?

spk_0:   2:02
We experience her more as ah, specialty JJ with a tooth. Them child, then a child with hard. The fact we knew about the operations over the years. But we were too young to understand, except the fact that we knew that we need to be careful with her near cell phones and walk through metal detector at the mall. We were aware that land was a special child that's you needed to be treated with more carefully and responsibly as a child. Many people always called me a little mother because me and her brother always used to take care of her and protect her.

spk_2:   2:46
Yeah, that's so funny that you say that that is exactly what your dad said to me. He said to me that you were like a little mother to her said, That's so funny. Other people said that to you, too.

spk_0:   2:57
Yeah, I hated that. I I just wanted to be a little girl, but not to be a mother. But now I understand why they say they said it

spk_2:   3:09
right. Right now you're a lot older and you can look back and you can see how you were so much more responsible than our Children your age, the most Children, your age. And I think that's why people were very impressed with how loving and how nurturing few were for your sister. Yeah, so it sounds like your brother and you had to do a lot of Leo's caretaking. How do you think that affected you as a child growing up

spk_0:   3:37
on one hand? This is the reality that we are born into this. So we didn't know anything else. But on the other hand, when we with friends and we saw their families, we realized that our family is special and different.

spk_2:   3:57
Uh huh.

spk_0:   3:57
For example, we saw neat houses and unbroken tie a puzzle with all the bars. So we know that we are different in session.

spk_2:   4:11
Okay, so it sounds to me like your sister was not is careful with her toys. Maybe. Is some of your friends siblings for Yeah. Uh oh, my goodness. Now, see, that's something that Michael never told me about. Okay. I'm learning something new about her. Well, how has living with Li l and carry for her possibly affected other aspects of your life?

spk_0:   4:38
I feel that my childhood and my life would Leo gave me a tool box full of life skills. It's something I will not have gotten anywhere else. I learned What is security responsibility? Ah, tour Lorenz. Then accept people that are different for me. I developed and independence. Yeah, from an early age and and I started my own business when I was 17 years old.

spk_2:   5:12
Wow. I didn't realize you started that jewelry business when you were 17. Yeah. Wow. So you think that Li l contributed to making you grow up much faster? Maybe then some of your peers

spk_0:   5:25
off course. Yeah, for a

spk_2:   5:27
visa to Yeah. Your dad told me that both you and John were so mature and really did grow up quickly and contribute to caring for Li L. And he said It's not like you wanted to. It's like everybody had to do that. That was just a way that your family coat, right?

spk_3:   5:45
Yeah. Here

spk_0:   5:46
were burned to this.

spk_2:   5:47
You were born into this? Yeah. Yeah, well, And so in a way, you didn't know anything

spk_1:   5:54
that was

spk_2:   5:55
any

spk_1:   5:55
different than that. That was

spk_0:   5:58
your normal Exactly.

spk_3:   6:08
Forever by the Baby Blue Sound collective. I think what I love so much about this tea is that some of the songs were inspired by the patient's.

spk_4:   6:19
Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify.

spk_3:   6:28
I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

spk_4:   6:35
Joining Music Home

spk_2:   6:36
Tonight forever.

spk_4:   6:43
Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our website, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_1:   7:22
You are listening to heart to heart with Anna. If you have a question or comment that you would like to address our show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com now back to heart to heart with them.

spk_2:   7:41
In the first segment, we had a chance to talk with superior leaving, and now we have a chance to talk to her brother. You don't. So welcome to heart. To heart with Anna. You don. I love having both you and your sister on the show today.

spk_5:   7:55
Um, thanks for having us.

spk_2:   7:57
Well, this has been friend, and I guess I should say shallow

spk_5:   8:01
loves allover, huh?

spk_2:   8:03
Now we talk disappear in segment one about growing up with a sister with a serious heart defect. But she told me that you all weren't really that concerned about the heart defect, that you were very young and didn't really understand. And it was more about Leo's special needs that was prevalent in your life. So how old were you when Leo's autism was diagnosed?

spk_5:   8:28
I was very young when it was diagnosed, so I didn't really understand what it meant. And because of that, I was going up into this reality. And it is very natural for me, for both of us, I think. But I did see that she is different growing up and rolling on the floor or doing funny noise and stuff like that. And even when it was not suitable for age, But it was special, and I was very proud of her. And the achievement see she got

spk_2:   9:03
Oh, that's so sweet that you were able Thio celebrate her achievements even though you could tell that she wasn't behaving in a way that is normal for Children her age.

spk_5:   9:15
Of course, of course, even some of our achievements are things that we didn't manage to do. Like when she finally learned how to read. She read maps for hours, and she knew every capital of every state in the world was pretty amazing.

spk_2:   9:31
I know your dad told me about that, and I was amazed.

spk_5:   9:35
Yeah, this is just one of the the things.

spk_2:   9:38
Yeah, He said she had an amazing memory for certain things that were geographical.

spk_5:   9:44
It was like from the little things, like learning how to speak in three words sentences, even bigger thing.

spk_2:   9:53
So could she communicate incentives? This with you

spk_5:   9:56
it was different. We tried many different and creative ways to communicate with her. I remember that once I had a candy that she really liked. And I told her that I will give her the candy if she will sing a song. To me, it was amazing. She sang a whole song like a regular girl. I didn't expect it. It was really, really amazing.

spk_2:   10:23
Wow, It almost makes you wonder if she really was kind of locked inside of herself. And just every now and then you could see who she really waas.

spk_5:   10:34
We try to get things out of there to hear from her what she's thinking or feeling, and sometimes we did do progress with it. When she got older, I tried to communicate with her wishes. Sometimes she would tell me stuff. So, like she told me she wanted to play the trumpet, so I didn't have a trumpet. But I shoulder videos of people playing trumpet, and she was really, really excited. And we would dance and sing and even play little instruments and stuff. But the real communication was between the acts and deeds. It was the unspoken communication that was the most powerful.

spk_2:   11:19
Can you give me an example like, was she good at giving you hugs, or did she have? I don't know, facial expressions that were communicative.

spk_5:   11:27
We did have that a bill, but the real communication, you could just feel it. You could just feel she's listening. It's pretty hard to explain, but it's the things that are happening between the acts between the facial expressions. Between the words

spk_2:   11:46
Is it kind of like how you can be with somebody who you've known for a long time and you don't even have to say anything. But you just have a easy report with each other.

spk_5:   11:57
Yeah,

spk_2:   11:58
I get that. So what happened after Leo was diagnosed with epilepsy? That must have really changed things for your family.

spk_5:   12:06
It was diagnosed at the time that she was moving north to a special host of that can take care of her 24 7 So I didn't notice a lot about the epilepsy. I did hear of a few attacks that she had there. And, of course, the final attack. That was the most powerful It was. Well, for one, I didn't know a lot about it. I didn't meet it Life but superior And I spoke a little bit before the show, and she has more to say about it.

spk_2:   12:41
Okay. Well, Sapir, tell us. How do you feel? Li l's epilepsy affected your family.

spk_0:   12:47
I know that Lee l didn't like the epilepsy and live in control over her body was hard for her because Millie l share the room. A bedroom together.

spk_2:   12:59
So did you actually witness her having some seizures, sweetie?

spk_0:   13:02
Ah, yeah. Loves to go on my bed. Girls living dead. So every time that I saw her lying on my bed, I understood that she was in between attacks or before, after epilepsy attack. So I experienced it more than he done, I think.

spk_2:   13:23
Right. So you when she were very, very close, Not only because you were sisters, but because you shared a bedroom. And it seems like you experienced more of the trauma that she went through having those epileptic seizures. Yeah. Yeah. So was it a regular thing where, like every day she would have a seizure? Or was it just occasional?

spk_0:   13:48
I don't remember because she came to the house every second Saturday, so I don't I don't remember if it don't remember. Sorry. That's

spk_2:   14:01
okay. So when she was a little girl and you were a little girl sharing the same bedroom before she went to live in a hostel, did you notice then that she was having the seizures? Or was it only after it was actually diagnosed?

spk_0:   14:15
No. The first time happened when me and my mom prepared Leo to school in the morning when we dressed her up. And she has this movement. She she's moving a lot when we prepared to school. She does all kind of movements. And then she had the attack, and we didn't understand first what's happening? And we tried to talk to her, and she didn't answer. And then we called an ambulance, and then she after a few minutes, she woke up,

spk_2:   14:47
right? She came out of it.

spk_0:   14:49
Yeah, and this is the first time that we saw it, and then it's diagnose.

spk_2:   14:53
Oh, wow. That must have been so scary for you.

spk_0:   14:57
Yeah, it was two weeks, I think, before she moved to the Austin.

spk_2:   15:03
Well, so Okay, so she had this attack in front of you and your mom, which must have been terrifying. And it sounds like maybe she went unconscious. Yeah. Oh, my gosh. Is that you call an ambulance? You must have just been so frightened.

spk_0:   15:20
Yeah, at first I went to my room and hide.

spk_2:   15:23
Oh, yeah, I can understand.

spk_0:   15:26
And And I went out and I pick my discern, put her on my mom and dad's bed, and then she woke up,

spk_2:   15:36
okay? And what was your mom doing?

spk_0:   15:40
I was So we both were panicked. We didn't understand what going on. And after I pick up to the bed, we quickly put clothes on her. So the amp Alaskan Come and take your fast tive the hospital. And then they told us that it was the epilepsy attack.

spk_2:   16:01
Wow. And so then you said within two weeks she had moved to the hostel.

spk_0:   16:07
Yeah, Andi, My mom and dad was scared that they don't except Ritter because they're epilepsy. And they say that they are really prepared. And every second child there has epilepsy.

spk_2:   16:21
Right? I remember your dad saying that the school that she was going to was more prepared to deal with the child with autism and epilepsy. Then they were autism and a heart defect, right? You wouldn't expect that necessarily.

spk_1:   16:38
But apparently autism and

spk_2:   16:40
epilepsy frequently happened together.

spk_6:   16:44
Take this hot industry. We're offering us a mechanical hot, and he said now that I've had enough to give it to someone worthy. My father promised me a golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_4:   17:05
Heart to heart with Michael. Please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments.

spk_1:   17:14
Thief

spk_2:   17:19
break. I really enjoyed talking with Don and Sapir about Hallie else Autism, epilepsy affected their family. Now I have them both in the studio again, and we're going to talk about life without Leo. So first of all, it's appear And you don I want to tell you how sorry I am that your little sister has passed away. You have my deepest condolences.

spk_0:   17:43
Thank you. Thank

spk_5:   17:44
you very much.

spk_2:   17:45
And I know from talking with your dad that you and the else appear. We're very, very close. And now, obviously, have you talked to you myself. I can see how close the two of you were. So how has it been to lose a sister? How has that affected your life?

spk_0:   18:03
I felt that I had lost my best friend. Yeah, and they had had a lot of communication problems. And so she was the most attentive person. I felt that I can tell her anything that I had no one to share with. Sure. And since we shared a bedroom together, it felt that's I had a strong communication and understanding relationship with me more than anyone else, I think. Sure, many times I helped explain in her to the rest of the house.

spk_2:   18:41
Yeah. You were kind of like her translator. Yeah, always when

spk_0:   18:46
you wanted something and it was hard to understand what it waas My mom and dad said, It's appeal. Come to us. What? Little once.

spk_2:   18:59
Oh, wow. It was almost like you all had a twin relationship and where you could just communicate without even needing words. So I'm grateful for having it. Oh, that's so sweet to hear because I think it would be challenging for a lot of people to have a sister who has so many needs and who is so special. But it sounds to me like you just embraced her for the person she waas. Yeah, Yeah, you done? I know that you're working in a hostel for adults with special needs. How did having a special needs sister influence your decision to apply for a job like that?

spk_5:   19:40
He definitely influenced by work with the people there. I can see that compared to some of my colleagues that my experience with Leo really affected in my ability to pay attention to those people because they communicate differently and they don't always really say what they want or feel or need. And you need to be able to pay attention to little details or two there. Even I don't have to call it mental temperature if there's a word for this. So it definitely influenced me. I can see the effect of my relationship with Leo that the work I'm doing today.

spk_2:   20:32
So do you think that it makes you a better employees? Do you think you're able to relate to the people that you're helping better, maybe, than some of the other people that you work with?

spk_5:   20:43
Yes, of course.

spk_2:   20:45
Yeah, You've already experienced this for 15 years. You had a little sister who communicated like some of the people that you're working with.

spk_5:   20:54
Yeah, she had different issues, but it's still communicating with those basic skills of listening and paying attention.

spk_2:   21:07
It sounds like both of you are such compassionate adults now, and I can't help but wonder if maybe some of that compassion happened because of living and growing up with the l. Wow. So the next question is for both of you, and I'll start with Sapir. Leo was not your typical sister, and she had a lot of needs where you had to help her with dressing, and it sounds like you were looking after her all the time. What advice would you give to a sister who is having to experience that?

spk_0:   21:38
Maybe even though sometimes it looks like it's not fair that you need to d'oh all kind of stuff that your friends can go to the mall and you need to stay at home and take care of your sister or brother.

spk_2:   21:55
Yeah, I can imagine where you would feel that it's not fair sometimes, but what would you advise them? Why would you help them? To get through that,

spk_0:   22:04
you need to embrace it, and maybe it's for the better, and it will help you in the future. So maybe it seems now that it's not fair, but you will come back to you in the future.

spk_2:   22:21
I think your advice to embrace even those difficult moments because later you may come to cherish them, right, and you may realize that yet seemed hard then. But now I realize that it helped to make me a better person. Exactly. Okay, Andy Don, what advice would you give to a family who has such a complex child in their missed?

spk_5:   22:47
I would advise him to dear every moment with those kids, because the effect of it I can tell about myself that it affected me so much to become the person who I am. And I can't even say that every little thing that I did for Lee El it was like putting another brick in the bridge between us and this soul relationship. It's still alive in my life, even though she passed away. So just now I can see what effect it has being with her with my mind and my heart forever.

spk_2:   23:45
Oh, I just love that. That's so artistic. That's so poetic. I can picture this in my mind with the bridge that you're talking about, how all of those actions help to make you the man that you are today.

spk_5:   24:00
It is, it is. And when she passed away, I was studying at the North, and it was a very significant year in my life and she passed away and and then I realized that many things that have been in me is because of our relationship. And even today I can feel this relationship even though she's not here the way we know, so right. So this is one of the things I advised the families and what's appear said about turning difficulties into opportunities because we can really all grow through those difficult moments. Sapir learned how to cook when she was really young on and she built her independence. So it's a real opportunity to grow and as better people at the end. What we have is what we have done and not the things we haven't done. But still it leave me with a little hunger to do more so for the people who still have the opportunity to be and build this relationship with those amazing angels. I think it's good to be aware and to live the moment like people say, because it has an effect for your whole life, even when or if your parting ways like it happened to us,

spk_2:   25:58
that's beautiful. That's absolutely beautiful. So the last question is for both of you also and that is, what advice would you give to parents about their healthy Children? We know that Lee l needed so much support and you must have sometimes felt overlooked. What did your parents do to make sure that your needs were also met? Disappear. I'll start with you.

spk_0:   26:22
That is a good question. I think that parents should teach the Children to talk to each other in the family and maintain an open communication channel. I know for myself that many times I didn't want to add pressure to my parents and make it difficult for them because they knew that it was hard for them because of years, medical condition. And I always wanted to be good at school and make as little trouble as possible for my parents and basically being a good girl. So I So I think that it's important to learn to share and feel free to talk about your feelings.

spk_2:   27:12
Hey, that's so pertinent. I I agree with you 100% that the communication is just vital. What about you? We done

spk_5:   27:22
so First of all, I joined superiors advisement. I think it is very important. Like she said, another thing I would advise the parents is to be aware and make sure the other kids build their own world. And they have their own place physically and mentally superior touched it a little before, but I can tell you that one of the most a significant moment in my childhood was when, at the summer of sixth grade, dead bought me a lock to my room. So we cleaned my room and then I could be able to keep safe things I build or I got because there was all over the place. He was. So yeah, she was so alive and interested in everything. So we didn't have almost anything of ourselves without having a signature of Lee Elena.

spk_2:   28:25
I love that its signature of Leo. Yeah,

spk_5:   28:29
you can ask that many, many, many, many stories, But for a kid to be able to have his own place is very, very important. So we all know that these kids need more attention. But what was really difficult for me was not the gift I didn't got. It was for a few years. They didn't have the ability to keep her safe, the things I had, So I think it's very important to be aware and to make sure the other kids build their own world and have their own place physically and mentally.

spk_2:   29:09
I can totally understand what you're talking about there. So it sounds brilliant that your dad gave you a lock so you could lock up some of your things and they could be safe from her curious hands because it sounds like she was very, very curious. But that must have been even harder for use appear since you shared a room with her.

spk_0:   29:29
All right. Everything that I liked and it was important to me it was up on the most high shelf

spk_2:   29:38
or yeah, I

spk_0:   29:42
I was very jealous That didn't got lack for his

spk_2:   29:46
room. Okay, So parents take a note here, especially if you have Children who have to share a room with the special needs. Child that may be a closet or a lock box or something like that should be made available to the child who shares a room so that you can have a box or a chest or something in another room. Where if it's something really important to you, you can keep that there and not worry that your sister signature would also be on back. Yeah, I think that's brilliant because even when you put something up high, if it's still visible, special kids have a way of getting up to it and you don't even know how they do it.

spk_5:   30:34
That's true.

spk_2:   30:34
Wow, I think that's brilliant advice, because that's something really practical. The parents can do that. They may not even be thinking about that. Oh yes, you don or superior. They may treasure assorted doll or even a book or ah, model that you would have made. And that while it's important to share with the siblings, there are some things that should just be that child's alone and the special needs child doesn't have a right to break everything or to put their signature on everything. And having a lock box or a special safe place for the Children who don't have special needs is really, really important. I think that's brilliant advice. Thanks. Wow, that's not something I would have thought about. So I just think that's really pertinent. Well, thank you so much for coming on the show today. Superior Any Don't you really have opened my eyes to what it was like to live with a special child like Leo.

spk_0:   31:36
Thank you for having us. And if I can, I just want to say something. Please. Yes, The Spike Lee l's health condition. Little was the funniest and the happiest child and its influence asked as a family and it gave us Ah, perspective in life asked and everyone around us. So thank you so much for having us on your show.

spk_2:   32:01
Well, I'm so glad you said that because your dad has told me that as well that it is because of Lee El Sometimes that he is able to smile because she did have such a wonderful sense of humor. I think that's beautiful. You don't Thank you so much for coming on the show today and sharing some of your philosophy with May I feel like I've learned so much from you today.

spk_5:   32:26
Thank Santa for having us. We're really happy for the opportunity to share a little bit of our story with you. Thank you very much.

spk_2:   32:36
Well, that does conclude this episode of heart to heart with Anna. Thanks for listening today. My friends, please come back next week on Tuesday at noon eastern time and until then, why did you leave a review of our program on iTunes? Remember, my friends, you are not alone.

spk_7:   32:51
This'll program is a presentation of hearts. Unite the globe and it's part of the Hug Podcast Network Bar. Tonight The Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to uplift on power and enrich the lives of our community members. If you would like access to free resource is pertaining to the CHD community, please visit our website at www dot hug dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_1:   33:32
Thank you again for joining us this week way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.