# Living with "The Cat Cry" Syndrome (Cri Du Chat)

## Метаданные

- **Канал:** Special Books by Special Kids
- **YouTube:** https://www.youtube.com/watch?v=DFOmzAxH948
- **Дата:** 02.04.2026
- **Длительность:** 26:13
- **Просмотры:** 674,141

## Описание

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Jason was diagnosed with Cri Du Chat syndrome, a rare genetic condition often called “Cat Cry Syndrome.” He is nonspeaking and requires full-time care. Jason and his older brother Kevin have been best friends since the day he was born. Now as adults, Kevin and his wife have taken on the role of Jason’s caregivers. It’s a responsibility rooted in love, and they can’t imagine their lives without him. Jason’s family hopes that by sharing his story, others will see that he is a friendly person who is worth getting to know.

## Содержание

### [0:00](https://www.youtube.com/watch?v=DFOmzAxH948) Segment 1 (00:00 - 05:00)

- [Chris] Jason, it's really nice to be here with you today, I'm having a great time getting to know you and your family. What do you want someone to know when they're meeting your brother for the first time? - That he's a very fun and friendly person and that he's worth giving a chance to. You know? - Hmm! - Yeah. And that his sounds, it's just him talking and if you make a sound back that you can probably have a conversation with him. - Hmm. - Hmm, right? Yeah, just like this sometimes! Hmm. Can I have a kiss, Jason? - [Chris] It's really nice to be here with you today, Jason. - Thank you, Chris. It's nice to be here with you. It's nice to meet you. Thank you for giving me a chance to tell my story. Right, buddy? - [Chris] Do you often help your brother communicate? - Sometimes. Maybe it's me, but I feel like it helps ease the tension in the air, you know? Just to kind of... Be a voice for him. He's probably thinking, "I'm not saying that. " (laughing) Hopefully I'm picking up what he's trying to express. - [Chris] How long have you been doing that for? - Probably most of his life. (upbeat bright music) - [Chris] Welcome to SBSK. We believe that everybody has a story that's worthy of being heard. When we listen to one another, the world becomes a closer place and we all benefit together. So without hesitation, let's meet today's friend! What do you think is the most important thing for other people to understand about your brother? - That if you took the time to know him, or just communicate or connect that you'd see he is a very loving, and expressive, and compassionate soul. And that, you know, it doesn't matter that his vessel might be a little different or have certain capabilities, or not, that the spirit inside is just as much potent, almost if not more so, 'cause it's allowed to shine through his vessel more. - [Chris] How would you describe how much you love Jason? - Ooh. I love all my grandsons. I have all grandsons, so I love them all. Hmm. - Is he talking to you? - He's talk... Well, not talking to me, but he's singing, aren't you? - Hmmm, ah. Hmmm, hm. - [Chris] What is he singing? - Nothing in particular, it's a Jason song. (lips smooching) - [Chris] Have you and your brother always been as close as you are today? - Yeah, mostly, I'd say most of our lives, just because he was my first brother. I always wanted a brother and I love all my brothers. I'm so blessed to have all my brothers, but (smooches) he was my first one. And so growing up with Jason, you know, there's a lot of hospital visits and my parents were young and they were doing the best they could, so it was challenging for them to have me and him as well. So we spent a lot of time together growing up. (Jason laughing) And so... - (laughing) You having good memories, buddy? I love you. We just spend a lot of time together. I don't know, I just always wanted a brother and he was just the perfect fit. You know, they all are perfect fits all my brothers are perfect fits, but he's just a very special piece in the whole puzzle. - [Chris] So you're the two oldest brothers? - Yes. - How old are each of you? - So I'm 39 and Jason is 34. - [Chris] At what age did you start to realize that he had a disability? (Jason smooches) - I think we all kind of realized very shortly on, within the first year of his birth. I think it was quickly identified that something was different. We just weren't sure yet exactly what it was, but it was... (smooches) We knew something was different. We just didn't know what the extent would be. - He was so tiny and very still, very still baby. He never moved much. He never cried, never cried. (Jason humming) And I just knew there wasn't something right. (Jason humming) - But there was a lot of limitations set, you know? And I guess medical experts are just going off of what information they have. (Jason smooches) And so there's a lot of limits cast on Jason as far as his capabilities and stuff. And we just... You know, fortunately my mother really pressed forward for Jason, and really advocated for him. And he was given a lot of opportunities because of, you know, her willingness, and my dad's willingness to take care of challenged individual as well. And he surpassed a lot of limitations. He's kind of like been a best friend to me growing up. I've never really met anybody like him.

### [5:00](https://www.youtube.com/watch?v=DFOmzAxH948&t=300s) Segment 2 (05:00 - 10:00)

He's very expressive, he's very loving, compassionate, he's just very fun to be around. You know, he kind of gets the most outta things and he's typically happy despite some of the challenges that he might have to go through. You never really see him complain or be sad, right, buddy? (Jason humming) Yeah? I'm just not listening, huh? Yeah? Okay. He's usually got lots of happy ways of communicating like that. You can usually tell by his facial expressions and body language how he's feeling. (Jason humming) So now he's caffeinated, he's in a good mood. He probably likes hanging around, and meeting celebrities. - [Chris] It's nice to meet you. I'm excited to sit with you in a little bit and become your friend. - Sounds like he's excited to meet you too. - Hmm! (Chris and Kevin laughing) Definitely excited to meet you. - [Chris] Do you enjoy when he gets the opportunity to experience new things and make new friends? - Definitely, 'cause he is always very happy and expressive about it. He always enjoys it. - Hey, Jason! It's really nice to be here with you today. I'm glad we get to spend some time together. My name is Chris and I came here to be your friend and I'm really enjoying getting to know you. I can tell you're a really awesome guy and I can tell your family is amazing as well. I'm having a great time with you! What is Jason's diagnosis? - So it's called Cri du Chat syndrome, and that's what the doctors labeled it because it Cri du Chat is French for "A cry of the cat. " And so when Jason was a baby, apparently his crying sounded like cat muse. And I guess that's how they identify. - [Chris] What do you know about Jason's diagnosis? - Oh, well. I remember when he was so little and he was so still, he'd never... His arms would be straight out, his legs and he never... He just never cried or anything. And so I talked to his doctor and his mother knew I was talking to him, and I said... And we also had a geneticist who worked with us and I talked to both of them, and he said, "What do you think it is? " And I said, "I think it's called Cri du Chat syndrome. " And he said, "Well, we'll let you know later on. " But sure enough, that's what it was. And 'cause I had gone through all my books and my pediatric books and all of that and found it. And then I saw that a lot of his things were gonna be cognitive related, you know, and it was hard for his mother because she said, you know, "It hurts to know that my son will never ride a bike, or he'll never go on a date, and he'll never get married, and things like that. " And I think that's something that every mother of a handicapped child goes through, who is limited in that way. And I think Jason was particularly limited in, you know, there he was never gonna get better because his spring was so small too. So I knew quite a bit about it and that he would never be a long time, if ever, that he would ever be able to go into the bathroom by himself. And it depends on the child. Some children do, some children don't. And poor Jason never did. - [Chris] How would you describe the way his diagnosis impacts him? - Well, I... I feel like it might be a challenge for him to organize his faculties together. (Jason screams) Am I wrong? Am I totally off base? I'm sorry. (Jason humming) I wonder if it isn't a challenge sometimes for him to organize all of his faculties together when he wants to accomplish certain tasks. For example, focusing his vision while walking up the steps. You know, I feel like it's either one or the other, but with a little assistance he can bring it all together and accomplish his goals. - [Chris] Tell me about how this diagnosis does impact his brain. - How it impacts his brain? Well, the brain is small. (Jason humming) Ours is, you know, pretty big, three pounds or so. (Jason humming) His is very, very small compared to the size of his head, but he's still as cute as he could be. And so the smallness of it cuts down another number of neurons which connect

### [10:00](https://www.youtube.com/watch?v=DFOmzAxH948&t=600s) Segment 3 (10:00 - 15:00)

the thoughts and things like that. So he wouldn't have the same kind of mental acuity or cognitive ability that you and I would have, for instance, just because of the size of that brain. And that's why he doesn't speak, because that's the piece that's affected most in his brain. (Jason humming) Yeah, I know, I know. But you still handsome! (Jason humming) - Would you like to do a high five? Is it okay if I steal a high five? - [Kevin] Please. Yeah. It's a little bit of provoking it like that. - So provoking it like this? You can come and sit with us, yeah. You can teach us how to become friends. I would love to learn. - Hey, Jason. Hi, Chris. It's nice to meet you. Nice to meet, Mr. Chris. You shake hands, right? Wanna give Mr. Chris high five like this? Look, see? He's cool. Yay! - Yeah! Amazing. - Don't be a shy guy now. He's awesome! - [Chris] What is your role in Jason's life today? - Well, just his big brother. You know. Due to a change in circumstances in our life, we were blessed to be in a position where my wife could be a caretaker for Jason, you know, paid for by the state. You know, fortunately there's good benefits like that come from the state. And so the state pays for my wife to be a full time caretaker for Jason. And so, you know, he's obviously a full-time type of guy, 24/7. So, you know, we're kind of a unit, me, and my wife, and my kids too. And you know, we all kind of just team up and take care of him, you know, so we're all just kind of a part in a team I'd say. So I'd say I'm just a part in the team Jason. Right? (Jason laughing) - [Chris] What was it like when you met Jason for the first time? - It was different, but my mom used to work as I think like a teacher's aid, and helped with some kids in school that had like cerebral palsy. So I kind of, you know, got to see some people with disabilities, (Jason laughing) but he was just so different and sweet. (Jason laughing) - Are you gonna give Ashley a chance to share her story? (Jason laughing) (Ashley laughing) - [Chris] Is that him expressing joy? - Yeah, definitely. He's probably happy. He's got Ashley here next to him. - [Chris] Ashley, what is your role within Jason's life today? - Sister-in-law, but also caregiver. I think I feel more like a sister than a caregiver, so it just feels natural. - [Chris] So what do you help Jason with as his caregiver? - I'm a lot of things, we all play different roles, but it's mostly like giving him foods, and snacks, and entertainment, and sometimes taking him places and you know, some hygiene cares and stuff like that. - [Chris] Skyler and Riley. Tell me about your uncle. - It's pretty interesting, you know, I mean, to me like, it feels like kind of a normal part of my life 'cause he's been there since I was born. But... Yeah, the more I think about it, it's like interesting 'cause not everybody gotta have one like Jason. - [Chris] Tell me about Jason's role in your kids' lives. - So, Jason's our older uncle, and I think he's a very interesting uncle, and thank God he's got really amazing nephews 'cause they take a big part in his life, and they love going out with him. They treat him like he's a king, you know, like he's this legendary Pokemon that he's super rare, and special, and they, they really make him feel cool, you know? - Well, I feel like I connected with him more like the older I got, like, recognizing his patterns and stuff. Like the way he reacts to certain things you do and like communicates and stuff with sounds. I feel like the older I got, it got easier to connect with him and really understand him. But younger, I didn't really comprehend it. It was just like, he was there, you know, he was like a part of the family. It just felt like he was one of us. - We'll go out on walks, he'll be in his wheelchair, and then they'll push it fast or do wheelies and make it fun. And he loves it. He's just making the happiest sounds. One thing he does is he's really happy. He'll like flick his hands in a certain way. We call it playing guitar, 'cause it looks like he's playing guitar. - [Chris] It sounds like you've learned to better communicate with your uncle as you've gotten a little older? - Yeah, definitely. - [Chris] How old are you two now? - I'm 18. - I'm 15. - [Chris] What are some of the patterns you've picked up on? - Well, he does this thing whenever I'm next to him. He normally leans his head against my shoulder

### [15:00](https://www.youtube.com/watch?v=DFOmzAxH948&t=900s) Segment 4 (15:00 - 20:00)

or like my hand or something. Like, at the beach, I was on my phone, he was on his like wheelchair and he kept leaning his head over on my hand like that, (Jason humming) and yeah, (laughing) stuff like that, so he reacts to certain things you do. Right, Jason? - [Chris] Do you ever tell your friends about your uncle? - Yeah, they all know about him. They all think he's cool and stuff. Same with my girlfriend. She likes him. You know, they all treat him awesome. - He also has, we call it singing, you know, my grandma Mabel would say that he'd sing Hallelujah sometimes and it might sound like, (humming). So he's got many different ways of communicating, but it's a mixture of sounds, and kind of body cues I'd say. (Grandma laughing) - [Chris] Does he frequently make vocalizations like he is now? - Yeah, yeah. (Jason humming) When I was sitting out there I was thinking, (Jason humming) "Wait till he starts going... 'Whoa! ' Real loud. " (laughing) Boy, you'll really get some communication then. (Grandma laughing) (Jason humming) But he's getting older and his sounds are changing, you know, he adjusts to what's around him, and getting older, and I think Ashley working, Kevin working with him all the time. I think that has a lot to do with it too. He... (Jason humming) I don't think he communicates as much as they think he does, I think a lot of it's just responding, you know, because of the cognitive dissonance there about... (cane clacks) sorry about that. But I think he knows his name (Jason humming) and he knows Joe, and all the family. - [Chris] Jason, this question's for you. Do you love your brother? - What do you think? Do you love me, Jason? I love you. - [Chris] Is he able to answer any type of question? Like multiple choice, yes, no. - Not exactly like that. No. - [Chris] So if you wanna ask him his preference, what do you do? - I'll be like, "Hey, Jason, would you like something to drink? " And he might be like, "Hmm. " You know, and just show with a happy sound and some body language that "I'm interested in that. " You know. But yeah, there's a little bit of guesswork in there too, trial and error to kind of figure out. Yeah. - [Chris] What is it like to not know a hundred percent what he's thinking? - It's good and bad. It's bad in that you sometimes really wish you could understand what he wanted, or needed if he seemed sad, or hurt, or something's down. And when I say good, it's interesting in that there's kind of a mystery to it. You wonder like, "What is he thinking in that scenario, you know? What is his perspective? What does he dream about? You know, what are his memories like? " - [Chris] Do you have any clue what his memories are like, or how often he reflects on shared memories together? - We kinda gotta guess that too. Like, perhaps if we go to the beach, we were like, "He remembers. " Because he seemed very excited once we were out in the sand and he was down on it and he just gets very excited. So it seemed like there was a level of recall, you know? (smooches) Right, do you remember the beach? Yeah? You liked sitting outside? Do you remember sitting outside in the pool? (Jason humming) See, pool, right? You thinking about that? Yeah, that makes me happy too. I love being in the water. Jason loves water. (Jason laughing) (laughing) Yeah. (Jason smooching) Thinking about the pool right now, aren't you? We'll have to get you wet soon, buddy. Okay? - One of my goals when I film these videos is to kind of take away the unknown for the viewer when interacting with somebody like Jason. So when they watch this, I hope they see that Jason's his own person, and he can respond to me however he wants, but we just keep the conversation going. Like, everything's fine regardless. Jason, you're awesome, you're your own person and I love that. But we're just sitting here having a conversation and everything's good. - Yeah. - So what advice do you have for somebody who wants to form a bond with Jason and your family? (Jason humming) - I'd say... - Could I mimic his... - Please, yeah. (Chris humming)

### [20:00](https://www.youtube.com/watch?v=DFOmzAxH948&t=1200s) Segment 5 (20:00 - 25:00)

(Kevin laughing) - He knows your language. I told you he's cool. (Kevin humming) (Chris humming) - Was that one him? - No, that was me. - (laughing) Okay. I couldn't tell. (Kevin laughing) - See he taught me his language pretty good. (Kevin and Chris humming) (Kevin humming) I love you, Jason. You're awesome. - [Chris] So what advice do you have for somebody? (Jason laughing) - I would say that- - He just laughed right there, right? - Yep. Am I doing a good job? - Every time I ask you the question, I interrupt you, sorry. - It's okay. Well, he does. He wants to tell us what I really should be saying. Right? Because you know what's up. I'd say if you wanna connect, and communicate with Jason, just talk to him. Maybe sometimes use some body cues like waving and saying hi, if his hands are open, maybe giving him five, but don't worry if he doesn't respond, sometimes it takes him a while to find the way that he wants to communicate, but he might, he might lean forward just like he did for a kiss, or he just might lay his head against you, or not. He might just sit there, and sing a song, or be quiet, but he still enjoys your presence and he still an enjoyable presence to have around. - And he deserves that opportunity to make a friend. Right? - Amen. Definitely. - [Chris] How did you two bond and connect when you were children? - Well, we just always hung out. You know, one of my favorite childhood memories with him is, is I had bunk beds and I liked to hang the blanket from the top bed over the bottom, little window peeking out with my TV, and my super Nintendo there, and he'd be sitting in there with me. He'd be playing like a spaceship shooter game and he'd be like my co-pilot, you know? So he's just kind of always just been around, you know, he is always been my little video game co-pilot. - [Chris] How would you describe what Jason brings to your family? - I would say it's interesting. He brings joy and definitely a lot of fun times. It can be challenging, you know, 'cause you have to make some accommodations for him. But at the end of the day it feels worth it, you know? 'cause then he gets to experience everything we do. - [Chris] What are some of the accommodations he needs? - I would say wheelchairs, making sure he have like his diaper bag, and a special sippy cup and some snacks. And just being prepared for having to go home or change him. And just the environment. Like, if it's too much for him to just be ready to go home. - [Chris] Can a lot of stimuli, and sounds be difficult for Jason? - Sometimes. - Sometimes it seems like it maybe being in a large public scenario for too long, maybe we all feel that way, but I feel like he just lets the frustration out more, you know? - [Chris] What has it been like watching Jason grow up? - Ooh, it's been wonderful watching him grow, because these two have done miracles for him. Really. They have taught him how to walk. He never walked, when they first started taking care of him. But now I'd come over sometime and they'd say, "Come on, you gotta show grandma how you can walk across the street. " I was flabbergasted. I mean this little boy just crawled. He'd come down the steps on his bum, you know? And he'd go back up basically the same way. Well, thank you, darling. Thank you. Aren't you smart? And then when I saw that he could walk, I couldn't believe it. And how they've helped him learn to feed himself on different times, you know, and drink different things and try different foods. And they have just wonderful with him. - He's a friendly person and I'm glad we get to be his friend. - I noticed before I turned on my camera, you were making kissing sounds at Jason, and about 30 seconds after you had walked away already he made a kissing sound back. So can there sometimes be a bit of a delay with how he responds to somebody? - Definitely. I think he takes a little time to figure out how he's gonna do things. Whether it's getting up onto a chair, or returning a kiss, you know? But he'll surprise you. - [Chris] What advice do you have for a grandparent who just learned their grandchild will have a disability? - I think being supportive of the family is what they have to be. And to love that child. There's no rhyme or reason why you shouldn't love that child, you know? And especially the parents I think, really went through a lot in the beginning. They really, really did. And I think that you need to be there to show them that there is goodness in this human being. There is love in this human being, and he's gonna love you back. Just like he loves Ashley and Kevin. It's very obvious to me. You know how much he loves that family.

### [25:00](https://www.youtube.com/watch?v=DFOmzAxH948&t=1500s) Segment 6 (25:00 - 26:00)

You have to get used to this idea that this child is not gonna be like you. He's the rest of your children. But that doesn't mean he doesn't love, and that you can't love him. So I think being supportive is the biggest thing because the love will come naturally. - [Chris] What is your biggest goal for Jason? - Just to enjoy his experience while he is here. (Jason humming) Just to know that he is loved and appreciated. Just to give back all the love, and appreciation he's given me growing up as a brother. - [Chris] How does he show his love and appreciation? - Well, going through life, sometimes you have ups and downs and kind of, Jason's always been a rock, you know, he's always been compassionate no matter what phase I was going through in life. So I appreciate him for that. He's got always been there for me in that way. - Thanks for watching SBSK, click subscribe here to be part of our community and hit the notification bell below so you never miss a story. You can even meet another friend here. See you next time!

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*Источник: https://ekstraktznaniy.ru/video/48361*