Growing Up with a Special Needs Sister (in English and Hebrew!)

In addition to getting a more in-depth perspective regarding growing up with a special needs sister, what sets this episode apart from other "Heart to Heart with Anna" episodes is the fact that it is our very first program in Hebrew. In addition to this episode being aired in English, Sapir and Idan Liben will then conduct an interview with Rachel Greenbaum in Hebrew. Hearts Unite the Globe: A Nonprofit Organization for the Congenital Heart Defect Community is devoted to providing programming to the CHD community around the globe. Today's episode is one in a Spotlight Series of foreign language episodes designed to provide information and support to our community members around the globe.

Transcript

spk_0:   0:02
I love

spk_1:   0:03
them to seize an 11.5 of heart to heart with Anna our theme for this spotlight. Siri's is hard to fix around the globe, and we have a great show for you today. Today's show is growing up with the special needs sister and our guests are siblings. Sapir Lee. Been any Donnelly? Been just recently, You may have heard siblings appear, and he'd only been on heart to heart with Anna when they talked with me about what it was like to be the sister and brother of a little sister born with a complex heart condition and autism and later epilepsy. I knew what we were having our conversation, that there was so much more to the story and he don't disappear, agreed to come back on the show so they could talk even more about being siblings with Leo and to do the very first heart to heart with Anna Show. And he grew. So while I will be interviewing them today in English, my dear friend Rachel Green Bomb will be interviewing them in Hebrew. My bilingual friends, who know both English and Hebrew, are in for a treat. You don, it's appear were born in Jerusalem in 1994 in 1996 respectively, and almost every way they 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 developed epilepsy quickly. Don is the pier 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 it general being there to help with whatever was needed. Li l passed away in 2012 at the age of 15. Today we're going to talk with you Don. It's appear a little bit more in depth about what it was like to grow up with a special needs to sister so they can provide their perspective on living with that kind of challenge or opportunity and perhaps offer some advice for other families in a similar situation. Welcome back to heart to heart with anise appear

spk_2:   2:02
I Ana thank you for having us again.

spk_1:   2:05
Well, I'm excited to have you on the program again today, and we'll talk with Don a little bit later in segment to disappear. When you talk to me recently about growing up with Lee El, you told me that you shared a room with her. I loved how your brother said that when you were growing up with Leo. She put her signature on everything because she was so curious about everything. Can you tell me a little bit more about what that meant? Was it destructive, or was she the kind of person who just had to take everything apart? Or maybe color on things? What was Leo's signature?

spk_2:   2:39
Lee Elsa. Every wall or every furniture in the house like it? Waas Ah, one big canvas. Anything that came to her mind was reading on them, whether it's math, calculations or things that she learned or heard at school. But in my opinion, it was the way for her to express herself, and in that way she would share some of her knowledge with us. It was a way for us to understand what is going on inside of her mind.

spk_1:   3:19
Wow, Yeah. So you got a chance to know what she was learning at school because she would come back home and she would share that with you

spk_2:   3:28
on the walls? Yeah, On

spk_1:   3:30
the walls are my goodness

spk_2:   3:31
yau the walls on the on my closet, my desk. She will write everything she loves to explore. And, yes, things were destroyed on the way. But I don't think that it wasn't intentionally to destroy things,

spk_1:   3:49
right? Yeah. It sounds like it was more a means of communication. Like she was working really hard to share with you and everybody. Yeah, it seems like sharing a room with someone. Likely. L would have been very challenging. I can't imagine having somebody right on my desk in my walls. Wow. Typically, when sisters grew up, they have to share a room. I shared a room with my sister and I was really, really happy when I turned 10. We've had moved to a new place and I got my own room. Did you ever have a feeling that she wanted your own room?

spk_2:   4:22
Yeah, of course. I wanted my own place in my own room, but I didn't have any other choice. So I tried to find some private places around the house to hide the things that were important for me, but we'll find a way to get to my stuff. That's not the

spk_1:   4:48
impression. No, no. That is the exact approach it I got when I talked to you before. I remember you telling me you would put things as high as you could, but it seems like she was a very resourceful young

spk_2:   4:59
later. But it's important for me to say that I also like to share a room with my sister because I felt I was taking care of her and being with her. And sometimes, really l used to touch our personal things. It was as if she wanted to be like us or leg like a little child admiring his older siblings.

spk_1:   5:25
Oh, I'm sure she did. I'm sure she admired everything that you and your brother did and that you and your brother had. I'm sure she wanted to be just like you, because that is how it is with the little sisters. I know I had a little sister myself, and I think we all have stories like that where they thio get a little bit too curious and nor things aren't quite what they were before, But you wouldn't give anything for having your little sister. So I totally understand that it was interesting how, when we had the episode last season, Don Todd says about how important it was when his father gave him, or when your father gave him ah, lock so he could make his things safer from Lee El Signature. I have a feeling that even with that lock, she still got two somethings. But exactly what was it that you did to try and keep your things that you said that you tried to find some safe places in your in your home? But if you could go back and give yourself some advice, what would you tell yourself? To keep your things safe from Leo,

spk_2:   6:31
maybe to take everything more lightly and understand that that it's the part off growing up with civility with special needs, and it's okay, and I need to embrace it.

spk_1:   6:46
Yeah, it's just stuff, and what's really important is the people, right. I think that's hard to remember, especially if you're a teenager. I think it's easier when you're a little kid, maybe But when you're a teenager, it's really hard, and I think that's good advice.

spk_0:   7:03
Remember, it's just stuff. And to embrace the fact

spk_1:   7:06
that you have that little sister who you love so much

spk_3:   7:11
takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who would be My father promised me a golden dressed twirled it, held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor.

spk_4:   7:32
Heart to heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments

spk_3:   7:47
forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's

spk_4:   7:57
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:   8:07
I love the fact that the proceeds from this CD are actually going to help those with heart defects

spk_4:   8:14
enjoy music

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home tonight forever. Look,

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you are listening to heart to heart with AMA. If you have a question or comment that you would like to address the 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

spk_1:   8:42
in the first segment we talked with Superior about growing up with Leo And now we're going to speak with you, Don, about what it was like for him to grow up with the special needs. Sister, welcome back to heart to heart Within that, you dog, I'm so happy you agreed to come back on the show.

spk_6:   8:57
Hey, and, uh, things were having us again.

spk_1:   9:00
You don't when I talk to you In our last show, we talked a little bit about growing up with the sister with special needs, and you mentioned how happy you were when you got that lock for your room. I was just talking to disappear about that. I'm wondering how it is for you at work because you work with adults with special needs. What's it like for you when you see adults who like your sister, I can't take care of their things properly.

spk_6:   9:26
First of all, I think that everyone who has even a little sensitivity would back up for a least. Make sure the people I work with will have all the things they need and all their needs and personal property in good shape. But I can't say that growing up with Leo made me much more sensitive to the reason and the logic that is standing behind the funny things they're doing. Regular people when they watch people with special needs, do funny stuff. They think it has no logic and no reason, so they don't know how to. Yeah, they don't know how to react to it

spk_1:   10:11
right.

spk_6:   10:11
But growing up with Leo gave me a lot of experience of identifying the logic that stands behind the stuff she was doing. So you can totally say that working with those people today, it's much easier for me to sense and identify the reason that sends behind the stuff they're doing, so I can work with it much easier.

spk_1:   10:38
Do you have people that you work with who are like Leo, where they just want to write all over everything. They're trying so hard to communicate or process what it is they're learning.

spk_6:   10:49
The people I work with are not autistic, but they have their own things. They're still different, so they can do many things that, as regular, healthy people, we won't understand first sight. But if you're sensitive enough and listening, you can see a really logical reason that is standing behind those weird things they're doing. And going up with will give me a lot of training because and I can see in the other people in the crew and the staff that something don't realize or identify the reason in the first few minutes. And sometimes it even makes them react, not in the proper way.

spk_1:   11:38
Sure, because they're probably frustrated. They're not trying to see the reason behind it. It sounds to me like you're very sensitive to trying Thio understand the reason behind what it is they're doing instead of just looking what they're doing.

spk_6:   11:52
Yeah, sometimes it's really hard, and sometimes I won't understand the reasons. It can't be things they're going through that they can't express or can't tell. But at least I can understand that I'm not understanding

spk_1:   12:09
right?

spk_6:   12:09
Most people are like you said, getting frustrated and from the first place they think there is no reason they think that because there are people with special needs, there is no reason for the things they're doing. And that's just wrong, Right to my experience with Leo really trained me to be able a little bit to identify the an actual reason or logic, funny as it is, is behind the stuff that they're doing that are weird.

spk_1:   12:44
Absolutely. I thought it was really interesting, and I thought you had a very special perspective. When you talk to me about turning obstacles with Lee El into opportunities for personal growth, and your answer to my first question is a perfect example of that touched me a little bit more about that. It does seem that growing up with Leo has giving you such a great insight into being able to work with adults with special needs. Now,

spk_6:   13:10
Yeah, so there are a lot of examples for that about how turning obstacles to opportunities It's very similar do the thing we talked about. But I think it's a very good example that because she had difficulties communicating It made us able to develop a sensitivity to listen very, very closely. And this thing is really affected me growing up. And I can totally say that it's very there in all my relationships and with the adults and working with

spk_1:   13:49
sure well, what a lot of people don't realize is that 60% of our communication is nonverbal. But with Lee El, even more of her communication was nonverbal, and you really had to queue into that to be able to understand what it was that she was trying to say to you.

spk_6:   14:07
Yeah, yeah,

spk_1:   14:08
I loved the story that you shared in our other program when you told me about asking Lee El to sing a song so she could get some candy that she wanted from you. How do you think people can use music to help those with special needs? Do you ever use music with the adults that you work with?

spk_6:   14:28
I think there are two sections for this answer. The first thing is not necessarily the music. I think it's being able to identify the trigger that the person that is standing in front of you needs to develop himself. There's a saying in the Bible that you need to educate the child in his own way. So, for example, in Superior and I spoke before the show. So she mentioned the things that teachers would do with Leo that they would promise they would teacher new words in different languages if she would do the work she had to do. And yeah, and it was great. She did it and she learned many, many words in different languages, and it really helped her achieve new goals and taking responsibility and developing yourself.

spk_1:   15:26
Sure. So she was interested in other language? Yes, and they used that motivation. To learn another language is to make her do the things that they wanted her to. D'oh, that's good. You do have to file what motivates people. Okay, so that's the first. That's the first part

spk_6:   15:41
is very important. Treating with music is a whole profession. I don't know a lot about it, but I do sense on those people that music is really speaking to them like almost everybody. But even more so, I do sense a good potential, but I don't really know a lot about it.

spk_1:   16:05
Okay, so you haven't actually used music with the adults that you work with,

spk_6:   16:09
not in the way that I can think it can really affect them and help them.

spk_1:   16:15
You're right, though, that music therapy is something that exists. It is a whole discipline of itself, but you have such wonderful musical ability, and my listeners don't know this. But when I meet weekly with Michael and we discuss the podcast that we're working on, I often am treated to music with the dawn in the background. I don't even know if he knows that. But I'm listening to him play the piano and he's a wonderful pianist, so I think that would be interesting. That might be an interesting field for you to go into where you could use your understanding of working with people with special needs and your passion for music together.

spk_6:   16:53
For me, music is a whole riddle, big mystery. But I do sense that in a mysterious way that I don't know how it really affect people. There's a lot in it, and if you would find some answers, maybe we will use it to help develop people because I don't know how to use it. I can't say that I'm using it to motivate or help the people that work with. But I do sense it has a lot of potential in it. And

spk_1:   17:27
sure

spk_6:   17:28
you can do big things with musical therapy.

spk_1:   17:31
Oh, absolutely. I think there's a lot of healing to be had in music. People without special needs to There's a lot of healing.

spk_4:   17:39
Dworsky has written several books to empower the Congenital Heart Defect, or CHD 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 his 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_5:   18:18
This program is a presentation of Hearts Unite the Globe and is 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 pretending to the CHD community. Please visit our website at www dot hug dash podcast network dot com for information about CHD hospitals that treat Children with CHD summer camps for CHD survivors and much, much more

spk_1:   18:50
before the break. I really enjoyed talking with you Don about Howell e. L has influenced his ability to work with adults with special needs. And now I have both Sapir end You don in the studio together, and I'm going to have just a few more questions about what it was like for them to grow up with the sister with special needs disappear. After we finished recording the other show, we talked briefly about how you weren't able to have sleepovers like other Children your age. Can you talk to me a little bit about what it was like for you growing up with Leo regarding having friends over to your house?

spk_2:   19:22
Yes, I can count on one hand the number of friends who came to sleep over and still I will have changed.

spk_1:   19:32
No, no,

spk_2:   19:33
it was not because I was a shame of Leo, not at all it was because times I invited friends to our home and I saw my friends reaction. I realize that's not everyone is able to accept a different child from them. And that's why I decided not to invite any friends to sleep over.

spk_1:   20:01
Were you afraid that maybe Lee L would pick up on some of their reactions?

spk_2:   20:07
I don't know if she realized, but I remember for my experience that I didn't feel comfortable with my friend's reaction. And

spk_1:   20:17
yeah,

spk_2:   20:18
when I was seven years old, I told my friends, If you want to come to my house, this is my sister and this is her room also,

spk_1:   20:26
Yeah, that would be really hard to explain to people. It takes a really special friend thio except you and to accept having a sister with special needs, especially one who can't communicate Well, I mean, it's one thing to have a sister who's in a wheelchair or to have a sister who's blind, but to have a sister who has so much trouble communicating that takes a special friend. Yeah, I can imagine you didn't have a whole lot that would really be able to get that you don as Theo, oldest child in the family and the only boy. What was it like having two sisters to grow up with? Especially given that your youngest sister had such complex needs? Did you ever wish for a brother

spk_6:   21:08
to tell the truth? I just got it as a fact. I do remember that, they asked. My parents were brother, but I don't really think I really I could imagine how it would really be.

spk_1:   21:22
The reason I asked the question is because when I was pregnant with my second child, my son said he wanted a brother. And when I told him well, it could be a sister, God could give us a sister, he said, Well, don't worry, Mom. Dad's a nurse and he works at the hospital. Just switching your boy Hey was so out of it. He wanted a brother that I wonder what it would have been like for him if he would have had not one but two sisters. Are you still able to have fun with your sisters? I mean, especially with Leo being so different

spk_6:   21:55
loca about appear. I think fighting is part of the fun

spk_1:   22:00
E. I love that For who okay

spk_6:   22:09
about Leo. The whole journey with her was so incredible. So I don't really think I felt I really need another sibling.

spk_1:   22:21
Yeah, two is enough, right? Yeah.

spk_6:   22:24
Look, Leon was like 10 brothers shared power of 10 siblings.

spk_1:   22:30
Wow. I kind of got that impression from the picture the two of you have painted. The next question is for both of you, but I'm going to start with you disappear. What was the biggest challenge you faced growing up with Lee? L like tell me what was the hardest thing that you had to deal with.

spk_2:   22:46
I just want to say, try dirty siblings, not stand is on. Okay. I think that the most challenging thing was the routine of our life. Our parents work, and it was hard to watch Liam for many, many hours around, and she will try us and not always let the afternoon passed quietly. To say that is what was stuff that is. I needed to be home and for PM to take. My sister and I could not go to my friends or to the mall with my friends. This was tough, but other than that, the l would try us at home. And as I said, sometimes she not always you let the afternoon passed quietly.

spk_6:   23:42
E think the lab would open when she got home doing all of her experience? Yeah, experiments. And

spk_1:   23:53
we

spk_6:   23:53
could hear a boom from one of the other rooms and stuff, but we doing and run to see what exploded?

spk_1:   24:02
Oh, no. Oh, no. So it would probably be tough for you to work on your homework or do anything that you needed to dio it. Sounds like she needed a lot of supervision. That would be tough. That would be really, really tough. Yeah. I can imagine not only the fact that you can't go do after school things with your friends like some of the other kids. But just the fact that now, in a way, you were becoming like a parent. You were becoming like her mom because you had to supervise her and make sure she didn't blow the apartment.

spk_2:   24:33
Yeah, but we didn't go after her. And look what everything that she doing. Sometimes we watch TV, we play on the computer. We did homework and then we smell the problem or heard a problem. Yeah.

spk_1:   24:54
Okay. Okay. Wow. that would be a challenge. Okay, You don. Was that also your biggest challenge? Did you have another challenge growing up with Leo?

spk_6:   25:04
They spoke about it a little bit at the last show. But I wanted to bring it up again that I think my biggest challenge growing up with Leo was not to get used to this reality, not to sleep our days in our time with her. Sometimes I did initiate a meeting with her and do all kinds of activities with her. But I think that was the biggest challenge not to get used to it and really be there with her.

spk_1:   25:38
Yeah, yeah, I can see where being challenged as often as you were with her being tested as often as you were. You might want to kind of shut yourself away at times and so to be fully present with her, I think that would be a challenge. I think that's that's a great answer. Well, let's end by saying what the greatest gift was that you feel you received being Leo's sister.

spk_2:   26:01
Thanks to yell, I am who I am today. And as we discussed the previous question about my friends, I can see the differences between me and my friends growing up because of the life of Lil, I got more maturity and responsibility and accepting the other and especially proportion in life well taught us a lot about the world and about ourselves.

spk_1:   26:31
Yeah, Yeah. I think she helped for you and your brother to be a very compassionate and such understanding adults. It's been a pleasure for me to get to know you threw your dad because I feel like I do know you. And I've really enjoyed the interview with both of you as well. You don't? What was the greatest gift you received? Being Leo's brother?

spk_6:   26:55
I want to join Superior than Sir. Look, there are a lot of great gift that we received going up with Leo. I think one of them is the lesson she gave us about being free and creative in or with our disabilities in life and meeting life with such joy and happiness and thirst for all of the treasures that life can give you.

spk_1:   27:24
Yeah, that's what your dad has said to me over and over that Leo was the happiest person that she loved to laugh, and she was just such a happy little girl.

spk_6:   27:33
Look, it was amazing. She loved to learn. She loved to try everything she could. We have a lot of stories that till this thing about her and look, she was so disabled. But she was so free. And I think it has a lot to teach us healthy people. But we're disabling ourselves. We're cutting our own wings. It's a big lesson how to keep self freedom with my disabilities. And everybody has his own disabilities and challenges in life.

spk_1:   28:13
Sure,

spk_6:   28:14
but freedom is not a technical thing. Freedom is the thing that is inside you. And you can manage free and happy and joyful. No matter what your disabilities are. Challenges are.

spk_1:   28:31
I love that. I love that. Wow. It speaks very well of both of you that you've been able to look back on those days and to garner the gems, the treasures that you have. So I appreciate what you have shared with me about Leo. I feel like I've learned some lessons from Li l threw you and through your dad too. So thank you for coming on this show and sharing your stories about Li l and your stories about growing up with me.

spk_6:   28:59
Thanks again for having us. I think it's really interesting experience to let out some of our thoughts and feelings from this amazing experience.

spk_1:   29:13
I think so too. Thank you, Sapir, for coming back on the show today.

spk_2:   29:16
Thank you, Ana. I really enjoy talking to you today.

spk_1:   29:20
Oh, you all were so amazing. That does conclude this episode of heart to heart with Anna. Thanks for listening. Please come back next week on Tuesday at noon, Eastern time. Or any time? Because that's a great beauty about podcasts are available forever after their broadcast. And remember to follow our

spk_0:   29:38
program on iTunes.

spk_3:   29:41
Remember, my friends, you are

spk_0:   29:42
not alone. 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, Jaworski can be heard every Tuesday at 12. Noon eastern time.