Sarah's Unique Genes (1 of only 400 with this Genetic Condition)
HTML-код
- Опубликовано: 11 сен 2024
- Sarah is 1 of only 400 people known to have a rare genetic condition called M-CM. She communicates by playing clips of old cartoons that are relevant to her thoughts. Sarah's family has embraced this style of communication and often listens to these clips to understand what Sarah is thinking.
M-CM is short for macrocephaly-capillary malformation.
More on Sarah's story: www.m-cm.net/s...
SBSK Patreon: / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
/ sbsk
I am disabled with sever anxiety. Mom is not getting Amy younger so my sister agreed to look after me I am so thankful for my sister.
I used to be a CNA. Your sister rocks ❤
I hope she is just as thankful for you! I am a caregiver for a loved one, and it is an honor.
I wish I hada sister like that. Mines useless and narcissistic.
My mum is my carer and raises my sons… I’m ngl I often hope I’m out of here before it gets to that.
Welp just undo the anxiety like me
Work hard and just stop
Its extremely difficult but not impossible
I'm still very very young and if I can do it so can you
This is a great sister / advocate!!! I especially love how she said if you're going to invite us you have to invite five of us and you have to have a chair for all of us. That made me cry because so many people do forget that the special people these extraordinarily special people have feelings just like a quote unquote normal person would. I absolutely love this series and I appreciate you so much for teaching us about so many different people and so many different abilities that come with different diagnoses!
Her family kept pointing out how Sarah has feelings just like everyone else, but I see other similarities, too. Many of us express our feelings in emoji, gifs, and memes. That's basically what Sarah is doing with the clips!
Mail Time!
Wooow! She at first wanted nothing to do with Chris,flipping her iPad back so he couldn’t see it, putting it up to her ear when he was singing. But he kept trying and she was eventually letting him see her iPad, looking at his iPad! That was really awesome Chris!
She communicates thru the clips??? Wowwwwww thats amazing
I know
Its like bumblebee the transformer that communicates through radio clips.
Yeah, super cool that she can incorporate a special interest into communication!
Yeah, it’s cool
Indeed.
What a bittersweet story of sweet Sarah, because she’s surrounded by loving family and of course yet still misses her mom and home in LA. For me, I noticed how beautifully close she is with her sister, and how gentle she is with babies. I wish everyone all the best! Hugs to Sarah! Thank you for sharing a little part of her life with us!
her figuring out how to communicate through those clips is just genius 🤩
@Hyde - I agree!
The way she loves the baby was so sweet! My heart exploded 😭😭
Her family is amazing! Especially her BIL! I don’t think that many husbands are so forthcoming and welcoming to invite a special needs family member into their home to come and live with them. Congrats to her sister for picking the best husband in the world!
props to the husband, loves her like one of his own
I glad you have the comments now. I want to tell you, "You are an awesome guy!"🌹 You have so much love!🌹🌹 Such a Big Heart!!🌹
Sarah is a rockstar! Love that she uses clips to communicate! 🤟👏💪👍
“Sarah is a rockstar!”
Her family have literally taught her ways to communicate,it so absolutely amazing.
It is the other way around. Sarah is the one teaching the family new ways to communicate.
Selecting just the right familiar clip to convey the emotion she is feeling to her family is a fantastic work around for typical speech.
That she is communicat through the devises is so cool and so smart! 😄
I know it is great that she is smart!
It's interesting that her condition affects the speech and problem solving part of her brain, but she problem solved a speech issue. Very cool!
@@jacqueeelle6287 It must have been a magical moment when the family realized Sara was using the clips to communicate her emotions.
I have watched tons of your videos and this is the first time I felt… animosity(?) coming from a caretaker. Sarah’s sister seemed offended by some questions, as if you were a rude person on the street vs. someone asking the questions many people have in an effort to educate and improve societal interaction with people with differences.
She also seemed to require a lot of affirmation herself. “Do you love me?” “Oh, you’re happy I’m sitting here?” “Are you happy living here?” That coupled with her phrasing, “We agreed that we would allow Sarah to live here…” instead of, “We really wanted Sarah to live here…” I could be way off base, but it paints a picture of someone who doesn’t really want this responsibility, feels guilty about that, and therefore needs reassurance that her true feelings aren’t obvious to her niece.
Regardless, it’s the first time I’ve found someone in one of your videos unlikable. Something about her is very off-putting to me. Maybe she’s just very protective of her sister and carries something from people not treating her kindly. I don’t know. It isn’t something I feel coming from other family members you interview, though.
Sarah’s uncle seems very genuine. Her aunt just seems to be doing and saying what she knows she’s supposed to do and say. She doesn’t seem very happy.
After writing this, I realize maybe I should explain. I have medical challenges and need a decent bit of help sometimes. I can easily tell who’s happy to help and who is just doing what they should do, but don’t want to. The latter make me feel terrible, like a responsibility and a bother. I’m very empathetic when I fear someone like Sarah may feel the same things.
I can see it too, but I can understand where her sister is coming from.
I mean it must be a little difficult in a way, she moved out and started her own family. Taking care of her kids alone must be a little difficult at times, especially having someone with special needs to care for on top of that. And she said that they didn't know she needed that much help until not long ago. So it's not something she was always prepared for. I don't think having feelings like that sometimes makes her unlikeable in any way. It's extra responsibilities that she wasn't prepared for. And it's understandable to not want them even.
Personally I feel like even having a cat is too much responsibility for me right now, I don't know if I could handle it and take care of it well, and not be overwhelmed. Taking care of another human is way more than that so if I feel like I couldn't care even for a cat, and don't necessarily want one even tho I really love them and used to have one because it seems too hard it makes even more sense in the case of human who requires way more than a cat?
And she already has two little humans to take care of. Not everyone is made for more than that. Take into consideration that she has a baby now and that alone can be difficult for some.
And I don't think having those feelings, if she does, makes her in any way dislikeable. You can be a wonderful person yet not feel like being a caretaker of someone with many medical problems is for you.
And even if she is overwhelmed by it all she still chose to help her?
So I don't see why there would be anything to judge her for.
Even if she's feeling mixed about this she's still trying her best and showing her love.
Idk what would be better to you, staying with person who'd partly feel like that but love her or not having proper medical care.
Hello, Sarah ! It’s nice to meet you. My name is Sandy and I live in Pittsburgh, PA. Your niece is so precious, and nephew is so handsome; it must be nice having little ones around, and I bet that you’re a terrific Auntie ! Not all Aunts watch “Blues Clues” with their nephew; you are so fortunate. I don’t have any brothers or sisters, so it’s just me..
Thank you for letting us get to know you, Sarah. You are beautiful, inside and out. ❤️❤️❤️
i like how sara's family made sure she has a way to communicate and make sure she is included in all they do
❤️❤️❤️
Hey Sarah and family! Thank you for sharing your beautiful family with us and the unique way you communicate with each other. I watched your video a few times now because I really learnt a lot from you about communication with people who are non verbal! Thank you for that opportunity! I hope you are having a great life 😊🌻
I don't pretend to be an expert on autism, but 100% of my experiences and interactions with people who have autism have been experiences where the show me through action that they are actually and truly EXTRA gentle to babies and small animals. My best friend has a brother with autism who sometimes has challenges with his condition, but if you show him a kitten or a puppy or even a baby, he will go out of his way to be gentle and kind to them. The people that I have met with autism wouldn't even think about hurting people or animals. Sarah, you are so sweet with your niece and nephew and I love that! What a beautiful woman and beautiful family!
Now that you have comments, I just wanna say that you, my friend, are iconic.
If anyone is an angel, or at least, tries their best to be an angel, it is you, Chris.
I think this is his nature and he doesn't even have to try. He just is.
This makes me so emotional.. she is SO sweet and using her cartoons to communicate is totally ingenious. ♡♡♡♡ I'm glad you're here.
I bet she misses her mama and papa.. tell her the internet understands and thinks she's cool!
Wow that's amazing that she manages to communicate using video clips
Sooo happy to see the comments are back. I love the work that you do. Keep it going brother!
Love Sarah and her sweet family!
I love how Sarah lit up when with her niece! Awwww, so friggin cute! Also, Sarah's sister has the most beautiful and special eyes! WOW!
People can say such rude things when they are clueless. This family is blessed.
Such a loving and wonderful family. So blessed. I am so glad you got the comments working again :). I did not notice until now. I am an adult and I still love blues clues lol. My kids watch it and it teaches very good morals and makes people happy.
Love the tablet that speaks. My friend has autism and down syndrome and he cant speak very well when he does speak, so he uses the tablet and it helps him express SO MUCH MORE and its awesome for him
It’s amazing to see that no matter how special their needs may be people will find a way to communicate even if it’s through clips from old TV shows. I wish Sarah and her family all the best for the future.
Your videos are so heartwarming. Thanks for sharing these beautiful stories about extraordinary people who may be a little different!
What a wonderful family Sarah has. 😢 Her Aunt not only loves her and will go to the end of the world to help her...AND also has a husband that's just as loving, and involved?!? Its a beautiful family. 💕
It is her sister, not her aunt.
She was telling her kids that Sarah is their aunty.
Props to the husband for being understanding and supportive.
She soooo has the teenager vibe 🤣❤ I know the kids love watching all those good shows with you /her
Okay but why does Chris remind me of Steve from blues clues? Never made that connection until now haha. I think it's great for her niece and nephew to be around someone with a disability. My boyfriend and his brother's aunt had down syndrome and I think they are some of the kindest men I've ever met
Yeah, he really does have that vibe.
Mail Time!
The fact that people ask why you'd raise your kids around someone like that....humans suck. My aunt has Downe syndrome and people have been RUDE!!!!!
I'm so sorry you have had such awful experiences regarding how your aunty has been treat, good she has you and your family to support her!
So glad to see youve got the comments back , well done you on weathering the wait : )
And I love your happy singing : )
What a great sister! Beautiful family!
I think you’re really smart Sarah. I think it’s so cute that you can use movie clips to communicate.
Hi everyone: It's so nice to see you all again on RUclips. I want to meet you all one day. Take care and stay safe.
Sarah is a role model for so many others. She is blessed to have such loving family ❤️
and they are blessed to have her
Thank you for sharing Sarah's story!! We love you!
I wonder what does playing that mail time clip over and over again mean at that moment. It's so interesting how she communicates with clips
Sarah has such an amazing family, her sister loves her so much it’s so beautiful to see how understanding she is ❤️
I know
There would be no questions or second thoughts. If any of my family, special needs or not needed me I'd do it with joy in my heart. All things are perspective and things are only a burden if you look at it that way.
wonderful interview ❤ hearing Chris sing mailtime has awoken something buried within my inner child
May God bless and keep you always dear Sarah and family. 🙏 🙏 🕊
Didn't we all love Blues Clues 💙
Such a feel great post! I love this family so much and send prayers and love for a great life! Thank you for sharing your story with us!
Now that is a great sister . looking after her family unconditionally 🙌
What an amazing sister and husband really nice to see
I love this channel sm
my brother learned how to communicate using the clips from movies and shows too!! he’s autistic but has behaviors very similar to her. although he’s a lot more exaggeration in his expression he’s GLUED to dvds and videos for comfort, learned to use them to talk, retains so much info from the media he watches and quotes a lot of movies and shows as a coping mechanism. my family wasn’t very accepting right away when my mom was pregnant with me, my extended family thought he would hurt me or not care abt me. he’s never put a finger on me, barely even wants to be around me 1 on 1 lol. i don’t mind. it just proves more how little disabled people rlly even care about outwardly hurting you or upsetting you. they just want to exist without ur opinion.
Steve from Blues Clues absolutely is iconic!
God bless her sister..❤she emotes such love and understanding.❤
I love her hair, she’s just so beautiful 😍
its so sweet that her and her nephew can enjoy blues clues together thats so sweet!!
Thank God for sisters! I wished every was like this about their relatives with disabilities. Love on them.
I always come back to this video. I love Sarah.
her and her family is so nice omg
Oh my goodness! Am I seeing double!!??
So adorable! Mom and daughter are TWINS! 👯♀️ ♥️♥️
Omg I LOVE seeing nonverbal people utilize ASL!!! I'm studying to become a Deaf Therapist so I absolutely adoreee signing 😍😍😍🙏🏻❤😇
"If you are going to exclude Sarah, we will not be there. It's as simple as that." Amen
I have autism and severe anxiety. It’s hard for some people to understand what it’s like having autism.
what a nice sister and brother n law , super cool to see
hi Sarah! my name is Sarah too :-)
👍 great video 🙏
Im so glad Sarah has a loving family. My brother is a douche and wouldn't do a thing for me. She is lucky to have such a loving sister!!!
Blues Clues! MAIL TIME! lol
Human Life is priceless! 🥰
She's incredible. Go, Sarah!! 🤗😊😍
Have they tried communicating through one of the many assistive devices that play words.
I like Sarah!
Omg, I completely forgot about mail time.
Seems like she really wants some Mail.
im so happu that they watch little bear i grew up with that show abnd i love it so much
I've noticed she keeps putting it up to her ear.. doesn't she have headphones?
Might be a sensory thing, it could be that using headphones feels overwhelming.
Incredible family 🩷
You know you were pissing her off by singing along to the clips she was playing right
Sister is awesome, bro in law , stand up ovation to you, some men wouldn't let a able person to live in there home, you all are great people. See ladies there are great men out there, dont settle for less.
Sarah is awesome God bless Sarah and her family ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏
Awesome family!
what a lovely family 😊
I would agree, blues clues was THE HOTTEST STUFF when I was younger! 😊
(I censored the message here, lol, gotta get get used to kids being here :3)
Yay the comments are backkk
❤️
❤️She knows ❤️
❤️
She totally loves that baby
X
She beautiful ❤️
God Bless you✨❤❤❤✨
Sarah is so cool!
God bless her
Hehe, Sarah must be wondering how Chris got that goofy. 😆
OMG! I loved blues clues!!!!! Definitely one of my favorite shows growing up.
You rock Sarah 😊
Steve should meet sarah in irl
Sarah seems super nice!
I would love to invite your whole family!
I can't believe anyone would purposefully exclude Sarah. That is terrible! Beyond rude.
@@jeffx9149 ?????
Remember: no one can be authoritarian socially for any reason, even if other people are. Love is an expression of honesty and acceptance. Authority is the opposite: dishonesty and no acceptance. Authoritarian attitudes socially create mental health issues and diseases of the mind. Authority MUST be shunned for love (understanding). It’s not hard, it’s the ONLY way that works…
God bless ♥️
I can't believe they're sisters honestly
Blue's Clues is great. I still have my Blue plushie pillow, it lives in my bed.
How old is she?
Can we talk about how smart this girl is?? I mean figuring out how to use clips to communicate is genius! I guarantee her IQ is way higher than that of most adults. ❤️
She looks pretty cool
Your a amazing gal.