Living with Prader-Willi Syndrome (A Hunger that Can't be Satisfied)
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- Опубликовано: 21 июн 2021
- Olivia is diagnosed with Prader-Willi syndrome and is missing part of her 15th chromosome. This results in many symptoms, such as an appetite that can never be satisfied. It is not just Olivia's genes that are rare, but also her enormous imagination.
Learn more about Prader-Willi at www.fpwr.org/ and www.pwsausa.org/
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I believe it would be a huge aid and relief for Olivia to learn sign language- she’d be able to combine both her vocal skills and her new language skills to be able to 100% come across the way she wants. Olivia is the sweetest thing and I wish her all the best in her future.
Thats such a clever idea omg
Thats so practical. I wonder why its not done.
That’s a good idea
@@stompthedragon4010 She may also have some trouble with fine motor skills.
@@lilliealicea8002 True. That could be. She is adorable. I used to work with some developmentally disabled deaf-mute children who were learning simple signs.
its amazing how olivia repeats herself to chris whenever chris doesn’t understand her. she even changes the words so that he would understand more easily. she’s so pretty and smart!!! her mom is an angel 🙌🏻
I was thinking the exact same thing. she is actually super smart. how she uses different words that might be easier for others to understand. she is an amazing little one!!!
@stanley karenzoe that could easily be adhd too
Ikr
I study speech pathology and Apraxia of speech is a motor disorder. Basically means the child is not able to articulate/form the speech sound with the mouth. It doesn't affect the person intellectually. Pretty much a lot of individuals who have apraxia know what they are saying and understand people but have a hard time articulating. In their mind they think they are saying it right which is why there is a lot of frustration when someone doesn't understand them. It is very interesting to see. Warms my heart.
@@Charlie-yv3ib also maybe part of Prader Willi
I love how she's not agreeable. She's not just going to say that you're right so the conversation goes smoother or so that you don't feel bad for misunderstanding. She wants to get her point across and will not settle for less. That's invaluable when you're in a situation that most people can't understand
I second you.
Yes. Great character trait in this little one. She’s tough & she persists to get her point across. She perseveres, despite the language difficulties! She could teach us a lot, if we just take the time & patience to really listen to her & TRY to understand. Cool kid!! ❤
Good point. She is solid and we can see in her eyes she knows how she is.
@@yeeyee6412 loo
Her mom explained that she hears it crystal clear in her own head and doesnt understand that people can't understand her.
She has developmental issues genius she's not an independent black woman.
you can tell the mom is really struggling. i hope she remembers to take care of herself as well as her children.
I hope she has time to, as many mothers single or not do not get to. Same with caregivers in general.
@@holyexperience1976 yeah :(
Yeah sounds tough. Is there a dad involved! Didn’t see him in the video
Sometimes SSRI meds and some tremor medications can cause one's voice to become sad in tone. Idk what the symptom is called, I'm not a medical professional!
@@kelseyjay3733 not as far as i know
"What would you like to say to everyone?"
"Paw patrol"
She has Spoken!!
Down from the mountain i bring the tablets. "Paw Patrol!" I holler, she has blessed us on this day.
What does paw patrol mean ?
@@meenakshipriya7308 look it up, how do u not know what paw patrol is 💀
@@ramram80154 tell me , please
@@meenakshipriya7308 it’s just a kids cartoon
So happy the comments are back. The community is whole again
me 2 the kids on here are so sweet and nice it brakes ya heart there living with things and there still happy and nice..i fear for ppl on the comments because there is alot of bullying..i came off fb cos of it not cos i was been targeted but ye
🧡
Me too 🥺🥺🥺
Me too
Based.
I want Olivia’s mom and my mom to meet each other. My sister has Prader-Willi as well and I feel like both of the moms would really benefit from having a close friend who shares the same experiences. My mom is just... alone. And she deserves friends that understand her.
💙 Your mom would be so proud that you care about her so much
Aww maybe have your mom watch the video first and then contact Chris and ask if she could have Olivia’s mom’s contact info.
What a sweet daughter, sister, and person you are Katie! 😊💖
I hope your Mom finds the support she needs to feel less alone and I applaud you for being so caring and supportive of your sister and mother! ♥️
Aww. Maybe she can join a group support online with other mothers and family members of people with Prader Willi
he is literally an absolute masterclass in how to acknowledge, talk to and play with kids, whether they’re disabled or not!
im always taking tips from chris on how i can communicate with my neighbors better! a four year old and a 9mo old :)
I love that Olivia is so patient. She was willing to repeat herself to help you understand. What an old soul in such a sweet little one. She is beyond precious, her mom is so right at how amazing her kiddo is.
I know my sister would had punch me in the face Olivia is a nice soul :)
Yes!!!
That's true
Because she's aware of her condition obviously. It's how she NEEDS to interact with people every day.
I talked in a similar way as a child... I honestly couldn't pronounce most letters properly (from a completely different reason!). And yeah the mom's right. it's frustrating af!!
As soon as Olivia's brother tells not to touch her toy, Chris proceeds to sit on the toy.... you silly man, we love you Chris!!!!!!!!!!
great take !!! love this darn channel!!!! omg
He did warn him! Lol✌❤
God bless, Jesus loves you and died for you all
That's why Jers kept biting him lol
He's a man they don't listen the best. Lol. Chris seems like a nice guy who is good with kids
I love how she didn’t change her activities to more “nicer” ones even when Chris tried to guide in that direction. She said. No. My dog wants to bite you. And I’m gonna let him. Good dog. Lol
Lmao.
"I think Jers just wants to be my friend."
"No." Hahaha. I love her.
Right? She broke poor Chris’s bubble. She’s like, you can THINK he’s saying that if it makes ya feel better, but he ain’t. 🤣🤣
@@aimeeglatt3299 😂😂😂 Jers wasn't having none of that!😂😂😂
"Uh oh i shouldnt have said that" and camera cuts XD was there some behind the scenes bites from jers?
Jers seems like a real jerk.
The mom was so emotional, I could see it in her eyes that life is so hard 😭
coming from someone who has a brother with PWS. life is hard, it's a constant battle, but it is also filled with constant blessings. My brother being born was the best thing to happen in my life, he has shaped me into the person I am. It is incredibly difficult to raise a kid with PWS, my mum is an absolute hero, but its 100% worth it because these kiddos bring so much joy into our lives!
@@bronteballantine-jones3772 that was sweet 😋 I hope he knows what a role model he has as a brother and I hope you're mum knows she's a legend
@@bronteballantine-jones3772 you should remind her of that, I’m sure it would make her feel appreciated for everything she does
It's remarkable to me how Chris is able to foster connection in a blink of an eye while barely knowing Olivia. Also, Olivia seems like she has the most imaginative thinking, what a lovely girl
I guess it's because of his extensive experience with kids, it really is amazing.
Não discordo
He sucked at that. I was blown away by how bad he was. Y'all apparently ain't seen any dude half decent with kids
Maybe if he wasn't half focused on playing with her and half focused on how he would be perceived on camera he wouldn't have crapped the bed
@@tom51202 Incorrect
Obviously Olivia is awesome, and can we also take a sec to acknowledge her mom? She is so good at educating others about this condition with clarity and patience! Everything we need in an advocate, and everything her kids need in a mom ❤️
yes, I agree, I love this Mum very much. but I think she looks so tired, I feel so much pain thinking that she has to be constantly on duty.... I hope she developes her own YT channel - I would definitely watch her!
Oh my gosh, I’m SO glad comments are back - I wanted to say the exact same thing. You phrased it just perfectly. What an incredible person for Olivia to have in her corner. You can hear such deep understanding and love come through in every word.
Yes agreed!
Yes I agree you nailed it perfectly. MOM is a hero for her daughter ❤.
@@tracianderson9823 all moms are heroes to have kids with special needs...!!
I have a relative with Prader-Willi Syndrome. The refrigerator, pantry, and garbage is locked at my grandma’s house because they will eat anything. They taught me how to be more accepting of people with developmental disabilities. So many funny moments with them.
It’s neat to see a kid with Prader-Willi Syndrome at a healthy weight. Unfortunately my relative gets stares from strangers for being obese. My grandma gives them a healthy diet. She can only do so much.
TU for sharing your story. Did treatment include putting him on appetite suppresents?
@@gamerwhiz6847 I believe my relative is taking some.
It's almost as if Jers is a physical manifestation of her hunger... She gave Jers a treat for being bad, she wants a treat to stop the pain (something bad) Angry and growling and she can't control it. I can imagine how hard that must be for her to have pains like that. I hope medical science can help find something to relieve it.
Love this
You’re so wise omg
well done
Omg, this is exactly as my psychologist told me kids would do in play therapy!
Deep. Got me thinking ❤
Olivia is so sweet and adorable, that’s obvious but can we applaud Chris for how he can play with the kids and just be silly and not care what people think, he was put in this world for this life 😊
God bless, Jesus loves you and died for you all
@@annyms5092 Brother or sister in Christ if you want to preach the gospel of God's grace you will need to read all the letters of Paul, from Romans to Philemon. But first, do you have the assurance of the salvation? (Romans 10:8-11) and (1 John 1:3)
So sweet
I WANT TO BE HIS FRIEND
@@zeferesalvoeservodecristo3606 The Bible and Christianity is about love. Not judging other people or acting like they’re not a “good enough” Christian or using the afterlife as a fear mongering tactic. That’s why people don’t like Christians these days (I’m Christian). All the love in the world to you 😊❤️
I can hardly stand the mild hunger pains i occasionally get. How does Olivia maintain such happiness in the face of chronic and severe hunger?!!!
She IS amazing just as her mom said!
Yes! I get headaches and cranky and tiredness if i dont eat and shes here smiling and playing
I like how she change her word 2 help him understand
I was going to comment the same thing. It must be so difficult to feel that way 24/7 but maybe since she doesn't even know what it feels like to be full, she's used to being hungry all the time?
Most people wouldn't really feel hunger pains, being tired, cranky etc if they ate correctly. Eating too many carbs/sugars WILL make you feel more hungry etc and you'll crash/get cranky when your body is low on carbs. You'll crave foods/carbs when you eat too many carbs/sugars. Eating a "Keto" diet (low carb, low sugar--high protein, high healthy fats) has helped me tremendously. I rarely feel hunger pains, cranky, tired, etc. I have more energy throughout the day, feel more refreshed/healthy. There's alot of research that shows cutting down on carbs/keto/intermittent fasting has many health benefits.
@@katieghoul0092 I guess it’s different for different people, during my weight loss journey I cut sugars and cut down on carbs and I still got hunger pains and stuff
I also have this disorder and it affects my weight as well as my academic experience as a college student. Thank you for making a video like this so others can understand what we go through!!
I live with Ehlers-Danlos syndrome. Totally different symptoms but both our lives are dominated by their effects and are incurable. I wish you the best.
Hugs to you both!
When my son (Downs Syndrome) was little, he ate SO much at two holiday gatherings because family said he wanted more, that his poor belly was tight and distended many hours afterwards, with him crying in pain. I realized that he didn’t understand when to quit eating. He’s a great guy, trim, but only because we eat good foods on a regular schedule- and he trusts me. Sometimes we get off schedule, but he’s patient.
My point is that we need to do what we can, the best we can.
It’s too bad if folks miss out on a friendship because they judge by appearance or ability. They aren’t quality friends to have, so no loss…!
If you don't mind me asking and in case you live on campus - do you have help managing your food intake?
@@ElaAusDemTal actually I don’t live on campus. I still live with my parents, but yes
Bless your heart. You are inspiring !
when she called jers a "good dog" for biting chris i lost it😭😭she so sweet , wishing her and her family the best
The last scene with the mom made my heart break in all kinds of ways. I assume he asked "how would you describe Olivia" or something along those lines. I feel like every possible human emotion went through her and flashed across her face before she said a word. You can see her love, her pain, her exhaustion, her pride. I had tears rolling down. Very strong mother. I hope she has help and support.
Well said !!
Yeah I think its hard. I get her, is between a lot of love but also a lot of hard work. But Olivia looks a very strong Beautiful girl with a very loving family!!! and that's great
I'm not a mother myself, but I felt every feeling that mom did with a catch in my throat and tears streaming I said out loud that is one amazing little girl with an amazing mom. You can also tell her siblings love her dearly.
She looks tired. I have so much respect for her.
How does this child communicate with teachers and day care?
I wonder if sign language would be helpful. If shes signing while she's speaking I think that would help alleviate the frustration.
I was thinking the same thing
That would probably be great, although - signing can be very challenging for somebody with low muscle tonus. Modified sign can be of help there :)
You could, but the signs would most likely have to be modified. Since she has low muscle tone, she probably struggles with some finger movements.
I was going to ask the same question
i think she would struggle with some signing because of the muscle tone, but maybe complementary signs?
Addison seems far more mature than most kids her age. What a sweet sister.
She is so sweet 😊 ❤
When Chris asked what do you want people to know when they first meet her… most parents say to be nice or don’t stare ect. She said not to let her be alone w food. You can see the concerned look on the moms face. I can tel she really worries nonstop. Breathe mama! You are doing an amazing job and both your girls are lucky to have you ❤️❤️❤️
@@icturner23 She didn't tell her to relax. She reminded her to breathe and praised her for doing a good job.
@@lacey9806 I have dealt with anxiety for as long as I can remember (clearly nothing like the level of worry that this mother endures) and can agree with both of these sentiments. While I’m sure someone who says things like “breathe, relax, calm down, etc.” intends to help, it can be frustrating because there’s thought on my end like “do they think I’ve never considered trying to relax or breathe before? If it was that easy for me to simply think “relax” or take a deep breath, and then feel improved, don’t they think I would do that?”. It’s an internal thought/reaction of “I’m sure you mean well but it also tells me that you haven’t put much thought into your advice”. Not much different than telling someone with an eating disorder to “just eat more”.
@@mandyheart8754 I appreciate your input, but as a mother of a child with kidney disease, I have benefitted greatly from people reminding me to breathe. Yes, breath was coming in and out of my body, but many, many times, not nearly enough of it. In my opinion, telling someone to "relax" or "eat more" is much different than reminding them to breathe.
@@icturner23 People can definitely benefit from being reminded to breathe. I have stopped breathing adequately many, many times over the past two years, battling my child's kidney disease during a global pandemic and I was grateful when someone pointed it out. At its worst, I was on the verge of fainting. So, quite literal and appropriate.
Being hungry all the time would definitely impact your temper.
Addison is such a sweet mature little girl. You can see that through her empathic nature and body language.
I was just thinking about this. You can see she really cares about her sister.
@@Julianninha indeed
The way Olivia looked at her almost made me burst into tears and I never bloody cry! Absolutely incredible family.
@@BodTheGrinch heartwarming, bless this family
She's a going to be protective over her sis, I can tell I'm glad she big sis like that
Did anyone notice how Addison wrapped her arm around Olivia, and the second Olivia squirmed, she very calmly pulled her arm back to herself? She has such a great understanding of her sisters personal bubble and small cues. 💜💜💜
Considering how many muscles you need to smile, I'd say this girl's body has got just the right priorities when it comes to which muscles she should be able to use the most effortlessly.
This man is an utter natural at talking to and interacting with kids. It brings a tear to my eye
Hes had a lot of experience at this point.
Literally
lol I just hide when kids are around
My sister has Prader Willi and it’s so interesting to see just how similar, and different, they are to each other!
My brother does 💗
@@ecojabi my brother does too!
Wow, I think it's beautiful how the internet can bring so many people together.
Sorry if I might come out as a bit rude or intrusive, but does this syndrome also has some other symptoms apart from insatiable hunger ?
@@84y87 not at all! Questions are how we learn. There are numerous other symptoms aside from the hunger aspect. I would encourage you to google and research because it’s very informative. One of the other MAJOR aspects of PWS is low muscle tone. My sister had it very hard when she was a newborn/toddler but she’s thriving now. She will be 6 come end of July and she’s just doing amazing. This little girl seems to be very much loved and cared for as well.
My little sister has PWS, she is 21. The spectrum is very broad with this syndrome. She has all of the physical features, some of the mental issues but overall she is incredibly smart, witty, and she does occasionally get full. She graduated high school with Honors, she was prom queen, and won numerous awards. Now, she spends her days with my dad on the ranch, feeding pigs, and gathering chicken eggs. When she was little we did have to lock up the food but now she has learned how over eating, negatively affects her blood sugars and how to have self control with that. She has recently been put on a low carb diet and is losing so many inches and weight that the doctors said she is making good progress. She does wear a CPAP which gives her good needed rest. She does act out when things changes fast or she feels misunderstood. I write this out not for those to judge, but to give parents and siblings of younger children with this syndrome an insight of what the future could look like. When we were younger my parents couldnt understand her so i would have to translate and sometimes break down what my parents were saying to her. Now that we are older its still an inside joke that i taught her how to speak and act in public to where people never knew that anything was wrong with her except that she was over weight. My parents had no help when she was younger so everything was trial and error. Yes you will have bad days, take your breather, give them their space and try again. Not everyday will be easy, but take joy in those small victories and celebrate them in those moments. Take your time to ask them questions on why they act out and how does it make them feel. I did this with my sister and it helped me alot to understand her mindset and how she sees certain situations.
❤U sound like a fantastic person & sibling.
It's very kind of you to share your knowledge, understanding and encouragement with others.
thanks for sharing
My uncle has Prader-Willi Syndrome ☺️ he’s now about 55 years old and still going strong 💪
God bless!! He must be a warrior. That couldn't have been easy.
My nephew Jason is one of the oldest persons with Prayer/Willi. His birthday is July 7, 1980. I helped raise him. It was challenging at times but he is well worth all the effort.
Happy Belated Birthday to Your Nephew!
I was born in the spring of
1980 . I feel so old!
@@melindamorrison1 I was born in October 1959, I’m old🙋🏽♀️💕
I have 2 PWS clients who will be 52 this month and December. I'm so thankful for the progress made with this syndrome that those with it are living long, full and healthy lives ❤ I'm happy to hear your nephew is thriving 🙏🏼
My niece had pradar willi syndrome, sadly she died 6 years ago aged 38. R.i.p.
Looks like her parents have done a great job at monitoring and controlling her food intake. People with Prader-Willi are usually overweight, and often significantly so. She's lucky to have such a diligent and caring family. It's hard to say no to your child and know that they are in pain.
Hi, I'm sure you're posting this in good faith, and I hope you take my comment in good faith as well. Even if Olivia was overweight, I don't think that would reflect poorly on her family. Some children are naturally bigger, it is just a fact of human variation, and there's nothing wrong with that. There is a lot of misinformation surrounding weight and health, and people who are "overweight" are often perfectly healthy. I say this as a fat person, knowing the pain that anti-fat bias has caused me. Thank you for taking the time to listen.
@@2tatianakfae no, that's not true. Your body can only compensate for so long. Eventually the "perfectly healthy" turns into diabetes, hypertension, and plaque in your arteries. People will think it came on suddenly when, in reality, it was happening for years. They just didn't realize it. Being told to not worry about it and just stay overweight or obese is not helping anyone.
Being overweight and obese WILL cause health problems. It's just a matter of time. I know that's not what you want to hear. It would be great if I could tell you it's just "the way you are" and a variation on normal, but it isn't. People are overweight because they eat too much and don't move enough. Doesn't matter what they tell you or themselves.
I have a genetic predisposition for obesity. That doesn't mean I was "meant" to be fat or that I can't stop it from happening. It just means I have to work harder than someone who is naturally skinny. And those naturally skinny people eventually have weight struggles as they age because, once again, your body can only compensate for so long.
I have been a nurse for 17 years and I spent 13 of those years working on the renal/diabetic floor. I have seen first hand what obesity does to your body. It's not good and yes, it is directly linked to the extra weight. No one carries that weight around for years and has nothing happen to them. I have a sister who is just a couple years older than me who just lost one of her legs to diabetes. She was diagnosed with diabetes when she went to the ER for a foot sore. About a month later her leg was gone. She likely would have said she was "perfectly healthy" before that all happened.
@@Karamarika diabetes, hypertension, and other health conditions can happen when you’re thin too. those aren’t reserved for fat people.
there are also a huge range of reasons someone might be fat, it’s not just that they eat too much and don’t exercise enough. that’s simply not how it works. I know plenty of thin people who don’t eat balanced diets or exercise, and yet no one talks about their health risks.
I implore you to please do some research into the history of obesity research. Like I said, there is so much misinformation surrounding weight and health. Fat people deserve to be treated with respect. I’ll include some resources below that I hope you check out.
What We Don’t Talk About When We Talk About Fat by Aubrey Gordon (book)
Maintenance Phase (podcast)
Belly of the Beast by Da’Shaun Harrison (book)
Fat!So? (zine)
Food Psych (podcast)
Fearing the Black Body by Sabrina Strings (book)
the youtube channel Ok2BeFat
@@Karamarika finally, someone had to stop all the sunshine and rainbows.
@@Karamarika this is factually untrue, as someone with a hormonal disorder and a thyroid disorder. i can eat the most clean diet in the world and work out for an hour every day and still have excess weight, and i do in fact stay in shape despite being technically classified as overweight. I am being monitored regularly by both my GP and an endocrinologist, as well. My blood work is fine. i have no joint or body issues other than posture issues from work. Just because you are a nurse does not mean you know everything, there is constant research being done in the medical field and it's becoming heavily apparent through these newer studies that medical fatphobia is a huge issue and that being overweight is not always a medical problem.
nobody is telling people not to take care of themselves when they don't immediately tell them they need to lose weight. in fact, a lot of medical professionals will write off people with legitimate concerns as just "needing to lose weight", which i can personally attest to having affected my life as well. in fact, i would have known about my health issues that helped cause the weight gain a decade sooner, had i had a healthcare provider not immediately tell me to lose weight and point at the door.
i understand you have concerns about your patients, but you need to understand that this honestly kind of rude and bad bedside-manner "tough love" approach does nothing except alienate people who are just asking you to be kinder and to listen to their concerns. literally nobody is out here saying "you do not need to take care of your health".
hi, im autistic (aspergers/HFA),2 of my main special interests are medical genetics ad psychaitry. i love this channel. i love looking at the different disorders and how they affect people. might be one of my new favorite channels
I'm interested in that too. I've got a file full of copied out magazines stories about different conditions. I'm also autistic.
I love Olivia's sister Addison, she is such a sweet soul. She seems to have so much love and empathy.
I love how Chris interacts with everyone he meets in exactly the way they need to connect in that moment. Mostly just by being authentic and empathetic. We need more people like Chris and Alyssa. This little girl is such a cutie! I cant imagine a hunger that is never filled! Congrats on the comments being back on, long overdue!
It's such a unique quality that people could do and practice but they dont learn how. Here (SBSK) Chris is able to show he does this in every possible situation. Its amazing
There’s a lot of unsolicited advice in the comments about what her mom “should do”. But being disabled myself, I believe part of radical inclusion is trusting that mom and daughter are making the best informed decisions for Olivia’s happiness. And also trusting mom will reach out for advice and help when she is ready for it.
Sometimes the comments can help others who are viewing the video and are dealing with similar situations.
People are just trying to be helpful
If I were in a similar situation I would rather have a slew of advice to pick through. Plus, sometimes you come across something that could make life easier that you didn't know to ask about.
I agree with both - we have to be careful with unsolicited advice; it may be helpful - in which case yes please! -, but imho should not be worded as "should". ;) (Yes, I did it myself...)
I think she's doing an amazing job already!
3:55 My youngest sister has CP, which has caused (among other things) a speech impairment. This is _exactly_ what it’s like for her! I can see how frustrated she gets when we (her family) don’t understand what she’s trying to say. She’ll be turning 30 this year and has gone her whole life with only a handful of people being able to understand her. And, like I said, even those of us that do sometime have trouble. I cannot imagine how difficult that must be; to spend your whole life _literally_ being misunderstood by everybody you meet. I’m not sure I would be able to deal with that level of aggravation. I’m in awe of those who do.
My brother is the same . He is 25 and has terrible social anxiety because of it . He avoids having to speak to anyone that isn’t our family 🥲. I wish I knew how to help him .
Any type of AAC device or AAC app could really help. I am most familiar with Proloquo2go, but any could probably really help. there are different buttons for different words that "speak" for you. I really recommend it for people who are non-vocal or anyone who struggles to communicate with speech.
Did they ever discuss or try sign language as an alternative with your sister?
My bio nephew's mother has it, she is 47, and has perfect speech. As for me, do not have CP but my speech sometimes bark.
@@Lucyinthskyy hi Lucy I'm really sorry to hear this. Has he ever tried speech therapy?
I wish I had Chris's confidence with children haha, i get so anxious around them, they're so hard to read for me lol. Sweet girl!
same , lol
Same, I never know how to react with little kids. I get so nervous
Same here
same I'm not good with talking to them like they're a puppy in that high pitched goofy voice.
I love that you edit the video to show Olivia's mom explaining her diagnosis, in between you interacting with her. You really do everything to make it clear that she's more than just her diagnosis. As you do with all your videos; you make it clear that the most important thing about this person is, well, that they are a person.
Olivia is so sweet. I feel her life and her mom. I know that word very well, because I have Prader Willi Syndrome too. I am 18 years old. So I send prayers and love for your family. Hugs.
Awww hugs to you
@@rachaelnelson3810
That's not nice
@@rachaelnelson3810 I pity you.
How does the hunger reflex challenge you...?
I have a genetic disturbance with a hormonal disorder that seems to cause stuff similar to PWS.
I have gut pain, identify with disordered eating and in episodes of constant eating.
I am also 18 years old. I hope you can experience the best things in life possible, always remember god is with you and has a plan, and if you don't believe in god keep believing in yourself anyways 💕
The relationship between the sisters is so sweet and genuine.
Olivia's mother sounds really tired. I hope she gets some kind of support
She is tired.
My son is 4 and has Prader-Willi, I'm so tired that I cry every day but I feel exactly the same way she does. Most of the time one parent checks out and the other parent becomes a 24/7 caregiver. I was in the Army and have deployed yet this is the hardest thing I've ever done and I know like she does, this is the rest of our lives.
"And I think when Jers bites me, she's saying "Nice to meet you."
"No."
That's cold. lol
Kids are so honest I love it hahaa
That sisterly love is so precious! The way Addison looks at Olivia with such adoration is so beautiful. You can tell they really care about each other! And Olivia is so fiesty in this video hehe :) She definitely has a great imagination
"I think when Jers tries to bite me she's really saying 'Nice to meet you.'"
"No."
IM DEAD😭
That's impressive imaginative play by Chris. It can be hard to come up with new ideas to keep the game going when all you're doing gets shot down 😂
Olivia sure knows what she likes and doesn't like and she won't automatically be anyone's friend, just because they talk to her. Good for her!
I loved the bond her and her sister have
“She (Olivia) brings character out in people” - this statement holds so much meaning, so well said by her mother.
Oh my gosh. The big sister is the absolute cutest.
Never stop being impressed at how good Chris is with kids. The interactions were so wholesome!
My heart goes out to this mother. She’s doing her best.
He's not a mean dog, he just doesn't like being picked up without permission. :)
Olivia has no problem being independent and speaking her mind. :) Feirce
Doesn’t like being sat on either! 😂
So happy to see the comments back. Olivia is a sweetheart and her mother is an angel. You are the greatest communicator I have ever seen and a very amazing man Chris. Thank you for what you do 👍.
God bless, Jesus loves you and died for you all
I was a personal assistant of a 30 years old man that has the same diagnosis with that beautiful little girl! He was the most kind and beautiful soul man i met in my life ...he didn't talk only show me what he wanted and the only thing that i find perfect in him it was exactly how he was...he had many other diagnosis and it made him so special... unfortunately people didn't understand him... didn't gave him the time to understand him...but i gave him my whole time...i was so sad when our paths separated...many blessings from my land Greece to all of you out there!!
Να εισαι παντα καλα!
Olivia reminds me a lot of a five-year-old girl I once nannied. Although she hasn't been diagnosed, I suspect she might have ADHD, because she was/is also highly reluctant to stop playing and engage in the "real world" (unsurpisingly, virtual Kindergarten during the beginning of the pandemic was a HUGE struggle for her). Every mundane thing we did, she framed it like a story; if we were on the swings, she couldn't just enjoy the sensation of swinging; she would say "Let's betend we're two sister cats who really like to swing, and I'm the older sister and you're the younger sister". When I played music on my phone, she often requested that whatever I chose be themed with what we were playing (if the characters were sassy, than maybe music about confidence; if we were playing with a basketball, then music from Space Jam). Getting her to clean up after herself could be a huge battle, but I often had more success if I framed it in play (for instance, if I made a big deal about her putting things away and protested "Hey! I was playing with that! Don't put it awa- YOU PUT IT AWAY!").
This just sounds like many five year olds in my experience, but I hope that child is met with the support they need in the event they have struggles.
I’m not an expert but I’m sure playing make believe is very common for toddlers and not necessarily an ADHD trait.
omg the way addison looks at olivia🥺 such a lovely family
I just want to hug mumma. You're doing such a great job. Your daughter is beautiful and you've done so well learning how to communicate with her. I wish your whole family nothing but the best in life. Blessings 💓🇦🇺
Oh, the energy required to keep these little ones attentive and engaged and moving on.
No wonder mum was nearly in tears at points. It must be hard to declare exhaustion.
And as for Addison…..what a fabulous child, a huge soul.
Humbling.
Shout out to Addison! You’re an amazing human being, and so strong!
My son speaks just like Olivia. Sometimes it can take hours to figure out what word. It is such a relief to get it! And HELLLLLLLLLLOOOO COMMENTS!
This is quite impossible not to love this sweet little girl.
Omg I was crying the whole time when they were playing!!
Is it me or this man is absolutely one of the greatest humans on earth? It's shocking how sensitive, caring, loving he is and how he's able to get along with EVERYBODY he interviews while staying completely himself.
I'm truly amazed and glad that people like this exist.
This guy is amazing with kids 😭 every interview I’m blown away at his patience
Thank you for this episode!
My cousin has Prader-Willi Syndrome and it's so unfair because not only are they hungry ALL the time, they also have a low metabolism and need to restrict their calories to not gain weight. :(
It's like the world's worst combination, insatiable hunger, slow metabolism, and low muscle tone so exercise to help counteract food intake is nearly impossible.
aww Chris struggles a bit to understand what she sais but still they play together and they are both happy! She doesn't get mad or anything, she just explains again when she feels misunderstood ... we can learn so much from children!
I see comments here about her ability to communicate. I think we often shy away from non verbal forms of communication but both sign language and digital talkers are amazing tools. I have seen parents afraid that using a talking device would encourage a child to stop talking but it actually is shown to improve verbal communication tools. So i cant speak to what is right for this family. But if you have someone with verbal communication limitations I encourage you to look into non verbal methods. When the whole family is on board you can really see a student thrive.
Olivia and and her sister Addison is so sweet and I love how Chris is interacts with every one he meets tears to my eye 😢😢
She named her doll "brown baby" 😂😂😂😂😂😂😂 I'm dead
i was looking for this comment!🤣 if there’s a brown one, there must be a white one too lol
I had a doll named "hard head baby" when I was a kid 😂
@@rachelsyrup I love that name!! 😂
IM WHEEZING I ONLY REALISED AFTER READING THIS COMMENT
I had a doll named Garlic
She is such a lovely and beautiful human being. I hope that as she gets older, she’ll be understood by more people so she doesn’t feel frustrated anymore :( She has a lot to say so I’m pretty sure she will meet amazing people who will love her just the way she is ❤️
Chris is a modern day saint. He's one of the few people I see on the internet who truly brings awareness and love and acceptance in the best way possible. It's still so hard to believe that at one point our community had our comments turned off by RUclips. Olivia is such a beautiful young girl with SUCH VIVID imagination, coupled with a very bright mind. I ADORE her and her family. 💜 Really brightened my day. Truly. 💜
A shout out to Chris!
Just the way that you bring attention to others about all of the unique people (especially children) in this world that are so amazing, sweet and full of love and personality.
Nearly everyone you interview I find so interesting and I see just how special and genuine all of these people are.
You have a huge heart and there should be a lot more people like you in the world buddy.
Chris: I think Jers is saying “nice to meet you!”
Olivia: NO.
To Olivia's mama - you are brave. Thank you. I loved Addison saying she likes that Olivia takes care of her. My daughters are 4 and 5, one uses a wheelchair and a feeding tube, the other has lots of things plus ADHD. They take care of each other in ways only sisters understand.
I also agree with you that it's so difficult when and how to navigate you redirect her to answer the question and when you let her pretend.
Alot of strength and success to you💕....your daughters are blessed with a great mom
Adhd kids should not have white sugar or red dies
@@rachaelnelson3810 when was sugar or red dyes ever mentioned in that comment
7:39 “I think when Jers bites me she’s saying ‘Nice to meet you!’ “
“…no”
😂😂 that made me laugh. I love these videos. It’s so true, people with differences whether disabilities, etc are just regular people. With personalities, interest, etc. ❤
I love the way Chris interacts and is silly with the kids. He is so sweet. Olivia is great and I'd love to be her friend and play with toys....with her consent of course 🥰
"... she brings out character in people..." Very well phrased! I am 53 and my brother Peter who is 56 has the Prader Will syndrome. We grew up together and never did I wish it to be not so. Our parents who knew each other from primary school and died more than 10 years ago did a fantastic job in raising the two of us, and my father later became a member of the board of the Dutch Prader-Willi Association. It obviously wasn't and isn't always easy, no it isn't.... At times my mother would be very tired, and couldn't manage it any longer, but my father was a rock, and the most understanding man I ever knew with a great sense of humour and the ability to relativise things despite having a demanding job. He - as other people noticed - took it upon him to face the challenges and not let him beat by whatever they were. Lots of patience, an enormous amount of patience, and trying again and again to find ways to make things work. Some never will and you will learn to accept that, some will and you take pride in it, and there are more than enough situations to laugh out loud and enjoy like you would do with any other child. For a parent the task is a life's journey. My brother has been living now for over 25 years happily in a nursing home, I think you call it in english, and though we live almost at the other ends of the world we keep in touch regularly. It has taught me that we are all vulnerable, but also can be strong and creative and that being faced with life's lesser pleasant sides will bring moments of true victory, encouraging reward, and indeed lifelong wisdom, too. The philosopher Soren Kierkegaard said it once in this way: Love the person you see, and see the person you love. This for me is what I experience(-d), and my story and I wanted to share it with all of you.
Thank you sooo much for sharing....may you and your brother be blessed , happy and healthy 💕
@@anoosh6515 Thank you for your reply, and yes blessings guide our lives/guides my life even if we/I fail to see them, I believe...
Thank you for sharing your story Karel. Your parents sound amazing and I'm so sorry they've now passed. I hope you are doing well ❤️
What a beautiful, imaginative, fun loving little girl! Olivia seems like a joy! Thank you for sharing her with us!
I like this guy. He asks really good questions, is super sensitive and interactive with the children and their family members, and is very patient. Bless him.
I'm not sure why these showed up on my thread but I've never heard of any of the conditions that these children are struggling with. We get caught up in our own little world and have no idea of the battles that other people are quietly facing under their own roofs. We need to be more compassionate to each other.
So happy this channel has a voice again!!! This is a lesson on NEVER giving up, just like the many voices featured on this channel!
Her laugh is the cutest thing ever , I hope for a full life this family seems so sweet and loving
Hehee..Olivia getting Jers to spit out the treat 3 times 😁 That was hilarious..Momma we SEE your beautiful daughter, not even close to how you see her, but she is MOST DEFINITELY full of character and fun and she's SO SO clever. She's blessed to have a family who take such love and care to understand her but you all are equally blessed to know her as we don't..I can't even imagine the joy and pride she brings your family.. You ALL are amazing 💚
Chris sits on Jers, Olivia give treats to Jers for being angry at him. Simple as that. So cute!
Such an amazing and supportive family!
There's something magic about how you connect with kids. It is beautiful!
was feeling pretty down but can’t stop smiling after watching this, watching olivia play with Chris and the love olivia and addison have for each other and the care her mum has for her. it’s honestly heartwarming and a nice break from all the bad things we see online
Oh, that is so sweet, when the sisters were hugging.
I’m so happy to be able to thank every person we get to meet on SBSK!,
yesssss this is great news. Heck we need this this year!!!
: Don’t touch her toys
: *Sits on her toys instead*
😂
At the end of the video the mother was about to cry... You can see stress in her eyes
At the beginning and middle, as well.
he reminds of blippi if blippi actually did something useful. his attitude towards kids is amazing and all these superkids are so inspiring with their outlooks on life.
She's really intelligent and I think she'll do just fine.
I wonder if she could eventually use a keyboard or mouse to type words onto a screen where they are converted to audible words, sort of like Stephen Hawking had used? She’s got so much to share with the world.
chris is the friend we all want in our lifes
She's such a sweetheart. I get the sense her puppy dog is a representation of her tummy and the way it growls inside/at her.
Jers bites Chris*
Olivia “here, Have a treat”
Flashes evil glare at Chris *
Lmaooooo I love her
He did sit on her. 😂 I’d say it’s deserved. 😉
I’m curious if Olivia has been able to try using augmentative and alternative communication (AAC) devices as a supplement to speaking and what that experience was like.
That would be interesting to see. Perhaps when getting tested she may have been able to try? With my traumatic brain injury I have to take a lot of tests and sometimes I get to try new things.
Yes, she would probably benefit a lot from it, if she accepts AAC.
@@mnmlst1 yeah, it's a matter of a person WANTING to use AAC. My autistic daughter is mostly non-verbal but has 0 interest in using a device. I think she wants to communicate via speech when she decides she wants to.
@@elizabethchandler4573 does she ever see anyone else using AAC in just normal communication, especially adults? Sometimes a lack of representation (or feeling out of place) can make it harder
@@alexwohlgemuth4099 No, I didn't think about that TBH. I was told not to use her device, but I also can't afford a second plus another subscription
My 4 year old was rolling laughing when you two were playing. So happy comments are back!! He and I love watching all the videos!
What an imaginative, sweet, funny little girl - and what a great older sister she has too. I love that she makes her point and repeats it until she’s been understood properly, I hope she continues that strength as she gets older. The lovely mum in this video must be so proud of her lovely girls.
oh my gosh, she is so precious, I love her laugh! She reminds me of my daughter, who is semi verbal but hard to understand. The mom is absolutely right- you have to be quiet, get down to her level and really listen to fully grasp what she is saying. Having a child that is different will teach you patience, understanding, and empathy.
i love how this channel shows what they wanna say to people. it’s honestly so wholesome