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Sarah's Unique Genes (1 of only 400 with this Genetic Condition)

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  • čas přidán 26. 05. 2021
  • 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

Komentáře • 192

  • @hopeflores7983
    @hopeflores7983 Před 3 lety +303

    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.

    • @squizzyicetea
      @squizzyicetea Před 3 lety +26

      I used to be a CNA. Your sister rocks ❤

    • @Fragrantbeard
      @Fragrantbeard Před 3 lety +36

      I hope she is just as thankful for you! I am a caregiver for a loved one, and it is an honor.

    • @wheatstonebridge
      @wheatstonebridge Před 2 lety +7

      I wish I hada sister like that. Mines useless and narcissistic.

    • @Hopeandpeaceinjesus
      @Hopeandpeaceinjesus Před 2 lety +5

      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.

    • @whatdoinamethischannel9749
      @whatdoinamethischannel9749 Před rokem +2

      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

  • @beckyklepper315
    @beckyklepper315 Před 3 lety +234

    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!

  • @laurenajkirby
    @laurenajkirby Před 3 lety +329

    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!

  • @mariafernandagutierrez3197
    @mariafernandagutierrez3197 Před 3 lety +261

    She communicates thru the clips??? Wowwwwww thats amazing

  • @Tranquility32
    @Tranquility32 Před 2 lety +19

    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!

  • @robmullin1128
    @robmullin1128 Před 2 lety +19

    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!

  • @hyde1893
    @hyde1893 Před 3 lety +114

    her figuring out how to communicate through those clips is just genius 🤩

  • @EyeThinkEyeLoveYou
    @EyeThinkEyeLoveYou Před 3 lety +56

    The way she loves the baby was so sweet! My heart exploded 😭😭

  • @elviramerriweather1002
    @elviramerriweather1002 Před 3 lety +64

    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!!🌹

  • @Fishman533
    @Fishman533 Před 2 lety +27

    props to the husband, loves her like one of his own

  • @livicent208
    @livicent208 Před 3 lety +15

    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 😊🌻

  • @lavonsgirl
    @lavonsgirl Před 3 lety +67

    Sarah is a rockstar! Love that she uses clips to communicate! 🤟👏💪👍

  • @robmullin1128
    @robmullin1128 Před 2 lety +15

    Her family have literally taught her ways to communicate,it so absolutely amazing.

    • @davidparker9676
      @davidparker9676 Před rokem

      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.

  • @graciesmom62
    @graciesmom62 Před 2 lety +6

    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. ❤️❤️❤️

  • @Iwoasasaned
    @Iwoasasaned Před 2 lety +66

    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!

  • @helenwhite1748
    @helenwhite1748 Před 3 lety +28

    i like how sara's family made sure she has a way to communicate and make sure she is included in all they do

  • @Pernille3841
    @Pernille3841 Před 3 lety +102

    That she is communicat through the devises is so cool and so smart! 😄

    • @juliamclane8319
      @juliamclane8319 Před 3 lety

      I know it is great that she is smart!

    • @jacqueeelle6287
      @jacqueeelle6287 Před 2 lety +4

      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!

    • @davidparker9676
      @davidparker9676 Před rokem

      @@jacqueeelle6287 It must have been a magical moment when the family realized Sara was using the clips to communicate her emotions.

  • @nikkoleadams4677
    @nikkoleadams4677 Před 2 lety +5

    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!

  • @ChrisW228
    @ChrisW228 Před rokem +15

    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.

    • @molly81398
      @molly81398 Před rokem +2

      I can see it too, but I can understand where her sister is coming from.

    • @er3275
      @er3275 Před 11 měsíci +4

      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.

  • @HueJakes
    @HueJakes Před 3 lety +8

    Sooo happy to see the comments are back. I love the work that you do. Keep it going brother!

  • @StayNBroke
    @StayNBroke Před 3 lety +14

    Love Sarah and her sweet family!

  • @ILoveMyFamilyAndFriends88

    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.

  • @shanicebajin4067
    @shanicebajin4067 Před 3 lety +19

    Wow that's amazing that she manages to communicate using video clips

  • @katrinakollmann5265
    @katrinakollmann5265 Před 3 lety +14

    This makes me so emotional.. she is SO sweet and using her cartoons to communicate is totally ingenious. ♡♡♡♡ I'm glad you're here.

    • @katrinakollmann5265
      @katrinakollmann5265 Před 3 lety +1

      I bet she misses her mama and papa.. tell her the internet understands and thinks she's cool!

  • @thegreyman4920
    @thegreyman4920 Před 3 lety +5

    Your videos are so heartwarming. Thanks for sharing these beautiful stories about extraordinary people who may be a little different!

  • @hypnotoad28
    @hypnotoad28 Před 3 lety +63

    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.

    • @matulich77
      @matulich77 Před 2 lety +5

      I think this is his nature and he doesn't even have to try. He just is.

  • @MellenNorway
    @MellenNorway Před 2 lety +9

    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!

  • @savannahtucker7936
    @savannahtucker7936 Před 3 lety +3

    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

  • @Kenzi24
    @Kenzi24 Před 2 lety +8

    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

  • @realroadrunnr
    @realroadrunnr Před 2 lety +4

    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.

  • @tori1901
    @tori1901 Před 3 lety +12

    What a great sister! Beautiful family!

  • @shawnaclarkson9401
    @shawnaclarkson9401 Před 2 lety +9

    She soooo has the teenager vibe 🤣❤ I know the kids love watching all those good shows with you /her

  • @matulich77
    @matulich77 Před 2 lety +7

    People can say such rude things when they are clueless. This family is blessed.

  • @mbc264
    @mbc264 Před 2 lety +7

    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!!!!!

    • @carolinerennaz5357
      @carolinerennaz5357 Před 2 lety

      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!

  • @kittensneezes
    @kittensneezes Před 3 lety +88

    Sarah has such an amazing family, her sister loves her so much it’s so beautiful to see how understanding she is ❤️

    • @juliamclane8319
      @juliamclane8319 Před 3 lety +2

      I know

    • @matulich77
      @matulich77 Před 2 lety +1

      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.

  • @AliciaDunk
    @AliciaDunk Před 3 lety +4

    Thank you for sharing Sarah's story!! We love you!

  • @leekshikapinnamneni4835
    @leekshikapinnamneni4835 Před 3 lety +5

    I think you’re really smart Sarah. I think it’s so cute that you can use movie clips to communicate.

  • @rosalieposalie
    @rosalieposalie Před 14 dny

    wonderful interview ❤ hearing Chris sing mailtime has awoken something buried within my inner child

  • @dillotea912
    @dillotea912 Před 2 lety +5

    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

  • @Nunyabswx
    @Nunyabswx Před rokem

    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!

  • @karobythell4425
    @karobythell4425 Před 3 lety +9

    So glad to see youve got the comments back , well done you on weathering the wait : )
    And I love your happy singing : )

  • @Kerousmac
    @Kerousmac Před 2 lety +8

    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. 💕

    • @davidparker9676
      @davidparker9676 Před rokem +1

      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.

  • @_greybones925
    @_greybones925 Před 3 lety +7

    May God bless and keep you always dear Sarah and family. 🙏 🙏 🕊

  • @marleenninaka1303
    @marleenninaka1303 Před 3 lety +5

    Hi everyone: It's so nice to see you all again on CZcams. I want to meet you all one day. Take care and stay safe.

  • @squizzyicetea
    @squizzyicetea Před 3 lety +11

    Didn't we all love Blues Clues 💙

  • @jakebowler3678
    @jakebowler3678 Před rokem +1

    Now that is a great sister . looking after her family unconditionally 🙌

  • @nicoleyates4470
    @nicoleyates4470 Před 3 lety +10

    Sarah is a role model for so many others. She is blessed to have such loving family ❤️

  • @lililay2627
    @lililay2627 Před 3 lety +4

    What an amazing sister and husband really nice to see

  • @mariposa2257
    @mariposa2257 Před 3 lety +8

    I love this channel sm

  • @sarahrobinson3423
    @sarahrobinson3423 Před 4 měsíci

    I always come back to this video. I love Sarah.

  • @valentine-br1ok
    @valentine-br1ok Před měsícem

    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.

  • @paultatarski166
    @paultatarski166 Před 2 měsíci +1

    God bless her sister..❤she emotes such love and understanding.❤

  • @CYV214
    @CYV214 Před 3 lety +2

    👍 great video 🙏

  • @Frog_Wolfgang
    @Frog_Wolfgang Před 3 lety +3

    its so sweet that her and her nephew can enjoy blues clues together thats so sweet!!

  • @zzzIIU1
    @zzzIIU1 Před 2 lety +1

    her and her family is so nice omg

  • @rivki_palattt
    @rivki_palattt Před 3 lety +8

    I love her hair, she’s just so beautiful 😍

  • @lyssabiss2317
    @lyssabiss2317 Před 2 lety +1

    what a nice sister and brother n law , super cool to see

  • @WestinNReptar
    @WestinNReptar Před 3 lety +10

    Steve from Blues Clues absolutely is iconic!

  • @nikbarker3640
    @nikbarker3640 Před 2 lety +1

    Oh my goodness! Am I seeing double!!??
    So adorable! Mom and daughter are TWINS! 👯‍♀️ ♥️♥️

  • @anytopicgoes4119
    @anytopicgoes4119 Před 2 lety +1

    Thank God for sisters! I wished every was like this about their relatives with disabilities. Love on them.

  • @sarahwisniewski8275
    @sarahwisniewski8275 Před 3 lety +2

    hi Sarah! my name is Sarah too :-)

  • @cindylouhart6945
    @cindylouhart6945 Před 2 lety +1

    She's incredible. Go, Sarah!! 🤗😊😍

  • @ifesbobthekillerpolarbear2013

    im so happu that they watch little bear i grew up with that show abnd i love it so much

  • @doublenickelsandketo
    @doublenickelsandketo Před 2 lety +3

    Human Life is priceless! 🥰

  • @charlenebailey61
    @charlenebailey61 Před 3 lety +1

    I like Sarah!

  • @MaddyIntravia
    @MaddyIntravia Před 3 lety +7

    Omg I LOVE seeing nonverbal people utilize ASL!!! I'm studying to become a Deaf Therapist so I absolutely adoreee signing 😍😍😍🙏🏻❤😇

  • @cassidyraerodrigues
    @cassidyraerodrigues Před rokem +1

    "If you are going to exclude Sarah, we will not be there. It's as simple as that." Amen

  • @kathryntabor8388
    @kathryntabor8388 Před rokem +1

    Have they tried communicating through one of the many assistive devices that play words.

  • @naiyahp
    @naiyahp Před rokem +2

    I have autism and severe anxiety. It’s hard for some people to understand what it’s like having autism.

  • @XanthosAcanthus
    @XanthosAcanthus Před 3 lety +2

    Omg, I completely forgot about mail time.

  • @eleighl
    @eleighl Před 6 měsíci

    Incredible family 🩷

  • @svart_kors
    @svart_kors Před 3 lety +1

    Awesome family!

  • @mikecampos5123
    @mikecampos5123 Před 6 měsíci

    Sarah is awesome God bless Sarah and her family ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏

  • @boredweegie553
    @boredweegie553 Před 2 lety +2

    I've noticed she keeps putting it up to her ear.. doesn't she have headphones?

    • @molly81398
      @molly81398 Před rokem +2

      Might be a sensory thing, it could be that using headphones feels overwhelming.

  • @alexeome
    @alexeome Před 6 měsíci

    what a lovely family 😊

  • @katiebunny3396
    @katiebunny3396 Před 3 lety +8

    Blues Clues! MAIL TIME! lol

  • @ms2507
    @ms2507 Před 2 lety +1

    God Bless you✨❤❤❤✨

  • @jannahportiz8146
    @jannahportiz8146 Před 3 lety +1

    Yay the comments are backkk

  • @cjmiller2037
    @cjmiller2037 Před 2 lety

    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.

  • @yenneffer7849
    @yenneffer7849 Před 3 lety +1

    Sarah is so cool!

  • @warriorv9359
    @warriorv9359 Před 2 lety +1

    God bless her

  • @montialarson
    @montialarson Před rokem

    OMG! I loved blues clues!!!!! Definitely one of my favorite shows growing up.

  • @peace.404
    @peace.404 Před 3 lety +11

    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!!!

  • @jameshw9751
    @jameshw9751 Před 2 lety +2

    Seems like she really wants some Mail.

  • @d.i.n.g.u.s
    @d.i.n.g.u.s Před 3 lety +2

    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)

  • @whatdoinamethischannel9749

    You know you were pissing her off by singing along to the clips she was playing right

  • @katherineknapp4370
    @katherineknapp4370 Před 7 měsíci

    You rock Sarah 😊

  • @marksneddon3709
    @marksneddon3709 Před 2 lety

    ❤️
    ❤️She knows ❤️
    ❤️
    She totally loves that baby
    X
    She beautiful ❤️

  • @bethralph8307
    @bethralph8307 Před 2 lety +2

    I would love to invite your whole family!

    • @jeffx9149
      @jeffx9149 Před 2 lety +2

      I can't believe anyone would purposefully exclude Sarah. That is terrible! Beyond rude.

    • @GiGitteru
      @GiGitteru Před 2 lety

      @@jeffx9149 ?????

  • @nerysghemor5781
    @nerysghemor5781 Před 3 lety +7

    Hehe, Sarah must be wondering how Chris got that goofy. 😆

  • @kansasymbremchef6951
    @kansasymbremchef6951 Před 3 lety +2

    Your a amazing gal.

  • @ashleighbenater3056
    @ashleighbenater3056 Před 2 lety

    Such a beautiful family 🥰🥰🥰🥰🥰🥰

  • @TheSleepSteward
    @TheSleepSteward Před 5 měsíci +1

    5:26 Hey buddy, just give it a few years... Maybe a lot of years but... You'll be able to watch Blue's Clues AND eat dinner. And no one can tell you otherwise. I know. Pretty awesome right?

  • @cristiancaravacagomez3888

    Steve should meet sarah in irl

  • @melissas_piano8970
    @melissas_piano8970 Před 3 lety +3

    Sarah seems super nice!

  • @waffles3629
    @waffles3629 Před rokem

    Blue's Clues is great. I still have my Blue plushie pillow, it lives in my bed.

  • @evamocha2611
    @evamocha2611 Před 3 lety +1

    The movie Flubber comes to mind! Remember Weebo???

  • @Sussyslvt
    @Sussyslvt Před rokem

    She looks pretty cool

  • @ronanevans3661
    @ronanevans3661 Před rokem

    beautiful inside and out I love you all guys 🙏🙏🙏🙏❤️❤️❤️❤️💯💯💯💯

  • @alinelima2357
    @alinelima2357 Před 2 lety

    Please, portugueses subtitles! Thanks