I have a friend with severe down syndrome who walks and do everything slow. Since day 1 i was impatient and mean to him because i thought he was a complete slow wit. I'm a client of a job program for people with disabilities and they shaped me to be more patient and tolerant towards people like him. Now I speak as positive and basic to him as possible because he's just not capable to understand complex concepts like neurotypical adults and that's ok. He's normal in my eyes. Why I behaved like a complete Karen to him since day 1? I myself decided to cloud my brain with so much negativity that it took me until yesterday to realize and understand that I need to rebuild my own house.
@@kangaroofuno it's pretty rude to call somebody a "Karen." You claim that you learned to treat your friend more positively but then you use a woman's name as a pejorative. Just say you used to be impatient and now that you understand more you are no longer that person.
Mom and dad please start a “go fund me” or something similar. This girl deserves the top notch communication technology that’s out and available right now. It will add so much quality to her daily and especially social life. So many of us would be more than happy to donate!
I would donate. She did say she’s been using it since she was 3 and she is 26 so that’s 23 years she’s been using it and is comfortable with it but I’m sure she could get something updated that she can learn to use and like.
(Although I do not know Why she does not have a more advanced one, and do not want to jump to conclusions - of whether or not the reason is financial), ๛ THIS COMMENT IS SO THOUTHFUL AND KIND, I BELIEVE IT SHOULD BE PINNED TO THE 🔝 🔝 🔝!!!😊
According to her fb page she has tried asking for a new dynavox one from insurance and it was denied :( . They are appealing it, but there is talk there of a gofundme incase the appeal is denied.
@@Coastal_Ace Hi. I had a dear friend with ALS and she went through the same thing. She needed a special medical mattress and insurance said no. She was approved for the eye-gaze computer for talking, but it took too long to arrive before the nature of ALS took its course. For crying out loud, why is it so hard for some people who are severely impacted by any condition to have access to ALL the things they need to be comfortable and thrive? I hope Ceslie’s appeal is successful and swift. Take care & wish you well!
Of course there’s updated versions of these machines but they are very very expensive and getting the insurance companies to cover these machines is very difficult!!
This channel, for years now, has taught me to be a better human. It's easier to be patient with innocence, but I love when you reach out to adults that have a story to tell about their human condition (not necessarily their disability). Ceclie has a story to tell that demands our patience.
yeah same!! it made me so much more understanding and patient. i started watching this channel when was around 8, and it helped me to not judge people because of their differences. i’m grateful to be raised with an open mind not just to disabilities, but to trans + queer people as well. videos like this help me to see many types of diversity, and help me to be respectful to everyone :)
I understand assistive devices are deeply personal for the people that use them and people can feel a lot of attachment and even identify with the voice, etc. I do hope in the future she’s able to get a more efficient means of communication because clearly she has so many things to say. Best of luck to her.
As someone who is unfortunately very impatient due to anxiety, watching this encouraged me be patient because I was excited to hear what you had to say. Thank for helping us understand your disability and for being a friend. You are such a cool person! 💙
i totally understand! my anxiety makes me horribly impatient and i tear myself apart for it as i don’t want to come across as disrespectful.. but i am learning and this video is so educational for me!!!
I have ADHD, and have had to reassure my friend who needs this tech since a motorcycle accident in her 20s that yes, I am listening even though I fidget. She got very uncomfortable the first few times we conversed, but her discourse is so insightful and thought out, I personally wish I could gather my thoughts like she can. She's amazing.
No broken hearts 💔 here. Just love and compassion and lots of love 💗 for the family. Compassion is something we all need. We all need understanding as well.
I couldn't imagine how frustrating it could be and how much time and effort it takes for her to type out what she wants to say. Would of thought there would be some pre entered common words like yes and no etc. I'm glad it was all left in for people to see how long it takes so people realise to be patient if they ever meet a person in similar circumstances
That’s a lot of work for her to answer a question. I’m glad he left it in because I didn’t imagine it would take that long now I know if I’m in a situation similar to this I will make sure to be patient.
Ceslie, I loved getting to know a little about you through the interview with Chris. I am sorry many people don't give you the time you need to communicate. In a busy world, where I live my life on a clock, I value any valid reason to slow down, & proper communication is the most valid reason of any I can think of.
SMA has come a long way in the past 30 years. My nephew has Type 1 SMA & was also diagnosed before a year old & was only given a 3 yr, at the most, life span. He is 33 yrs old now & doing great. He even survived having Covid & kicked its butt with flying colors! I know the bravery it takes to live with SMA and my hat is off to you!
I was sexually assaulted as a teenager and my ptsd stems from that but my I have other diagnosis as well like autism anxiety disorder pdd nos which stands for pervasive developmental disorder not other specified and my last one is depression
@@annmacgregor4231First of all sorry for what happened to you, tho my experiences and yours with life are different, I still think there is beauty in it one way or another. I m just a random guy on the internet but hey I wish you the best :)
I appreciate that you left in the time she was typing. Patience is so important and so many people lack it and because of that they would overlook the smart and amazing person she is.
Ceslie....you're lovely! Your parents must be extremely proud of you. That's what you call a winner, someone who let's their spirit shine despite obstacles.
I can't imagine how frustrating that must be. I watch Shane Burcaw's channel (she shouts it out: "Squirmy and Grubs"), and he has stories about people assuming he is mentally impaired and treating him like a small child.
As well as there is a cure and in many countries, it's paid for by society, and available for free but in the countries where it's not it's very expensive.
I so appreciate the typing time being included in the video's runtime. I need to slow down and be more thoughtful. I have people in my life who take longer to respond than I expect and my impulse is to jump in to fill the silence. Many of us need to become better listeners.
Oh I love this video. My little sister has SMA type 1 and she's 12. She is semi verbal usually making sounds like "dun dun dun dun" (wedding March song) when she's talking about getting married. Some times is difficult for people, even me some times, when having a discussion. I appreciate the patience in the comments of people realizing how difficult it is to communicate for a lot of the people living with SMA. And to this woman, Ceslie, I'm praying for you to find a man who literally sweeps you off your feet but NOT literally takes your breath away. Keep being amazing! And to your parents. Thank you for taking such great care of her. I know with watching my parents how different and difficult it can be just medical wise raising a child with SMA is I couldn't imagine how much different it was 26-ish years ago. God bless you all.
I’m so glad you left the response time in this video. Ceslie you take all the time you need to say exactly what you need to say. Your thoughts are important and valid. We could all benefit from slowing down and actually listening to each other.
I love that you put in the long length of time for the responses for some of these questions. She is using old technology in this vid but it gives other people that are watching the opportunity to be patient with Cecile and kind of get to know what it's like to communicate with her, and to also know that all forms of communications are indeed valid. 😉
I hope Ceslie now has an updated speaking program. You can just see she has a lot to say but the technology is holding her back. Edit: I think it would also be a great insight to have another video of Ceslie, or someone who communicates the same way, and show what’s actually happening on their screen so we can see how it all works. I think that would help people understand why it takes longer for the words to come out.
So glad comments are back!! As soon as I heard I ran back to this video to say Ceslie you are so lovely and I learned so much from you. Thank you for doing this video and giving us the chance to meet you!!
I love that you trust your audience enough to leave the comments open. I noticed most times when trying to learn of certain conditions, comments are usually disabled and I understand why. It's just refreshing to be able to express opinions, ask questions and give support.
Kudos to Ceslie (what a gorgeous name BTW) and her adoring family. I'm a firm believer that you can get through almost anything in life with support and love. Ceslie has this in spades plus she has an indominable spirit. She's doing so much with her life in spite of her disability; she's really inspirational. Thank you, Ceslie.
I can’t imagine how frustrating this must be, I’m sure it’s a much different perspective for us than for her because she’s always lived with it but regardless she truly has more patience and strength than I could hope to
Have you encountered a person with a lot of diagnosis well I will tell you all of mine my name is Molly and I live with autism ptsd pdd nos standing for pervasive developmental disorder not other specified my age is 30 years old I have fits of rage when I hear someone with autism is brutalized by police and it makes me so mad I feel like defunding the police forever so my anger goes from cussing to screaming and venting to get my point across
I imagine it must be frustrating for her to have people around her talking and by the time she gets around to giving her opinion on a topic, the conversation has progressed much further. How frustrating I hope she upgrades her voxby soon
I love this video, a big reason being it helped me realize that the patience part isn't what I lack; it's the idea of being comfortable with SILENCE + it not feeling awkward to me, as if I *have* to fill the air with noise constantly! Thank you so much for your courage, beautiful young lady!😇🙏🏻❤
Ceslie I learned so much from your video. While I haven’t yet met someone that used a device to assist them in speech, I now understand what to expect when waiting for a response. It would be worth the wait to talk with you and I think that makes connections with you even more special and delightful. I’m so glad you shared your story with us. Thank you.
I really appreciate the unedited text communication, this world is too fast paced and we just need to learn to be patient. Thank you Ceslie. Having that patience to allow someone to create a response is so important esp for those who have disabilities that can't talk quickly or can't talk at all and need assistance. I wont deny that hearing her medical instruments assist her breathing is oddly satisfying to listen too, considering I work in a nursing home I've learned to appreciate it a lot since these products are there to help keep someone alive. Bless you Ceslie you're a beautiful person inside and out.
Hi Ceslie, thank you for sharing a bit of your life with us. You are an intelligent and beautiful young lady. I enjoyed that the video was unedited and I was able to experience what a conversation with you would really be like. You are awesome.
I stutter. The section where Ceslie took some time to answer "I prefer open-ended questions" definitely hit me hard due to the length of time for the answer. it's obviously not the same, but i've had cases where 10 or 20 seconds or more may go by. i turn super red and frustrated as it just seems hopeless that the words will ever come out. I've had people ask me "what should i do when you stutter?" I always answer with "what do you do when someone is speaking to you who doesn't stutter?" they usually say something like "just listen, i guess." and i'm like "same rule applies." obviously different situations may dictate different responses, but i imagine there are few things Ceslie enjoys more than when someone who doesn't NEED to be (not family, doctor, etc.) is genuinely interested in what she has to say and affords her the patience and comfort needed to communicate fully
One of your best videos! Allowing all of us to experience Ceslie's communication process was fantastic. Ceslie, you are an amazing woman and are definitely living life to the fullest! God bless you and your family.
I love that you included the real time speed of her responses. She seems so genuine and sweet and I hope she finds the relationship she is looking for. She deserves it!! We love Ceslie 🥰
I appreciate that you left the length of time for her responses in. It teaches me I need to slow down. Take a breathe and listen. Such wisdom and insight Ceslie has!!!
Really sad to see that an insurance company would turn her down for an upgrade on something that has no doubt come a long way in technology. She definitely deserves that chance to have a better life. This by far was thee most calming and educational experience I have had yet on this channel.
Watching this was an amazing lesson for me. I am challenged with ADHD, not interrupting people is sometimes hard. Watching this interview made me incredibly humble and determined to practice patience. I am glad I did for you are indeed a bright, sparkly, strong and smart person 🙏💚
You made it through this full video with ADHD? 🙌🏻👏 That is awesome! I have 3 ADD/ADHD people in my family and I teach many: I know full well how hard this was for you. Patience and perseverance are a great combo!
@@pinlight97 haha thnx, yeah it was a bit of challenge in itsself but i feel whatever wiring one has, one should always challenge yourself to braintrain and overcome it. :)
That length of time really mean a lot to understand the real value of words and communication. Thanks Ceslie a lot and best wishes ❤️ You and your family are awesome 🙏
i was impatient at first, but then i felt actually calmed by the breathing noise (or maybe it's a different machine with a rythm? not sure). There was something calming about that, so i was more more than happy to wait for your answer, and that while in the middle of an anxiety attack lol. You are very inspirational! i would love to be friends with you, such a bright personality.
Ceslie is such an incredible young woman!!! She IS so bright and shiny, and beautiful!!!! Her family is so loving, and she has such a wonderful way with words!!!! Ceslie you most certainly are an inspiration to and a role model for others!!!!
This show has been good for me to watch. It's really opened up my thoughts and sensitivity toward others. I always have been sensitive since I have my own disabilities, but it's taught about what others go through and their needs and wants.
what if youtube incorporated something like positive human emotions and discussions into the algorithms, perhaps channels like this would reach more people? things like this could literally save the 🌎🌍
It's really important and amazing that you leave in the full time it takes her to type in her answer. Most people don't realize it can take multiple minutes or they don't have the patience to wait... the girl I work with has rett syndrome and she sometimes also takes multiple minutes to give an answer and many people don't take the time, it really makes me happy to see you show the world this!
I don't understand how she's able to be so quick with communication. That's awesome. I usually can't come up with such a good verbal response that quickly, even without having to use technology as a middleman. She's so cool!
Good God, I really appreciate the extended pauses of patience to allow this person to express themselves. It's so important, especially in a world of such impatience. Thank you, Chris, you are destined for unimaginable rewards in God's Kingdom and the eternity. This is serious stuff, man, serious.
I loved that they left in the real time it took to tipe out the answer. I hope some day she can use more advanced technology to communicate as it seems like a big problem that people did not give her the time she needs to express here answer!
What an amazing, lovely, smart, kind, and determined person she is. I bet it’s very hard an I’m sure a bit vulnerable showing the world who you are an what you go through but it does show how much of an awesome person you are. It shows how no matter what odds we are up against but with hard work, being kind, patient, and loving will move mountains. Thank you so much for sharing. 💚💚💚
When She listed her hobbies I found out she likes pretty much everything I like! She follows squirmy and Grubs too :) I’m hoping For the best for Ceslie!
this channel has made me so much more understanding and patient. i started watching your videos when was around 8, and it helped me to not judge people! i’m grateful to be raised with an open mind not just to disabilities, but to trans + queer people as well. this helps me to see all different types of diversity, and shows me how to be respectful to everyone :)
These videos are extremely valuable. If you've never communicated with someone like Ceslie or in a similar method, it's hard to know how to even approach it. Or to even begin to imagine what kind of person they are without the typical cues such as facial expressions and tone of voice. Getting to know who Ceslie is is a wonderful opportunity. I would love to know more about her. Thank you Ceslie for allowing us to know more about you. And thank you Chris for helping us to connect to others we may not know how to otherwise. ❤
This is absolutely extraordinary seeing a motionless and empty looking individual inputting large words and clever sentences that really express herself and her life, I have never seen anything like it, and would consider it a phenomenon to humanity
This video carries a wonderful message that Love is patient. It only takes love to be patient and give time to communicate with Ceslie. She is amazingly intelligent.
Ceslie watching this video and seeing how you've overcome all the obstacles in your life is truly inspiring. You're amazing in every way and I hope you find your soulmate soon! He's out there, you'll find each other eventually. :) Some people might be impatient with how long it might take to get a response, but it's truly refreshing in my eyes. People spend their lives rushing all over the place, never taking time to sit down and breathe. I don't have a disability like yours, but I do struggle to express myself with words. It takes a bit of time, but when people like you and I do speak, I guarantee it's something worth listening to. Don't let anyone ever tell you otherwise.
So glad I found this channel.There is so much I'm learning and it's been a real eye opener. Cecilie you are beautiful. And your parents, are so incredible. God bless❤️❤️❤️
What a wonderful person. I would love to see some form of eye tracking tech developed for someone such as herself. I think that would assist in her ability to communicate with others. Having said that, the "wait time" between her responses was not only a helpful tool to understand how it is to communicate with someone with a diagnosis like this one, but also gave an appreciation that sometimes it simply takes longer to communicate even simple responses. Patients is a virtue, but it isn't a God given one. It's a virtue that must be exercised. Differently abled people like Celsie remind us of that. Humility and patients MUST be exercised.
I love Ceslie! How amazing is it that she defied the doctor predictions after she was born! (Amen!) She has a beautiful spirit, and is so easy to love and get to know. What a special girl, and I wish her the best! Edited to add: I think it's a wonderful learning experience, too, that Ceslie's communication time was included here unedited. My takeaway from this video is we should slow down (A LOT!), otherwise we could miss out on meeting many, sweet, kind, thoughtful people like Ceslie. And like Mom said so nicely, it’s also simply giving people the respect they deserve. Take care everyone!!! Thank you for this video.
I myself have also learned so much from these videos, especially about patients it opens up a whole new world. I really appreciate the time and effort that these people put into this the passion the love, certainly makes you appreciate life much more. God bless you on continued success with your videos
I once completely lost my voice for almost 9 months. It taught me how important it is to be able to communicate with others and interact with them. She is amazing to use her patience and persistence to talk using her computer. My daughter-in-love's father has SMA and is losing his ability to talk. He will be needing such a computer.
Thank you for letting me experience the length of time and showing me how important it is to be patient. Ceslie must have an amazing amount of patient to do this all the time. Thank you Ceslie.
Im the kind of person who likes to doodle or fidget while having a conversation (its the ADHD) and it actually helps me focus more on what the other person is saying. I imagine it would be so relaxing and pleasant to sit with Ceslie and talk at her own pace and have some tea and doodle or hold my kitten or anything like that 💚💚💚
Those moments where Ceslie is typing and you are waiting for the answer are just beautiful. These must be among the best and most important moments one can have in life: just two people being there and communicating/ connecting to its fullest. I can see Ceslie is making her parents the happiest people. When I want to speak too quickly I will remember Ceslie.
Love love love this interview!!! I know it's not the same disability than her, but I worked with someone who is in a wheelchair and it takes her more time to do everything, I won't go into details to respect her privacy, but I appreciate that you left her reaponse time unedited, people don't get how much work it takes for some people to communicate, it's important for people to see it. We, people with disabilities, physical or not, need so much more work to get the same things done, we are seen as weak, but we are just, in fact, stronger and more resilient and perseverant. Im so happy to have met such a wonderful young woman through this video, wish I knew more about her 💖
What a great gal!! She’s just a regular gal in that body. She would be great and easy friend. Glad you interviewed her and her family. What a great family
These parents of families like this are just so incredible. They know what's really important in life. I'm so jealous. I wish nothing but the best life for them and all the happiness and health they could want and need.
I love your job! u show people that all people with different abilities are just like everyone else! Because they are! I hope your channel continues to grow! And that you continue to make a better place of this world! She's a wonderful person! She is an inspiration, because she can do whatever she wants! I'm proud of her, even thought i really don't know her! :)
@@theboujieproletariat yeah, i know it’s not a word that should be avoided, it’s just, that, well, she has different abilities, or am I wrong? There’re too many ways to say it, and all of them are completely correct. I used that word not trying to avoid the other one, just expressing my-self in a different way, and I don’t think that should be a problem.
@@gay.faerie1111 "Different abilities" is a euphemism which adds stigma to disability, despite some people's well intention. The issue with "different abilities" is that it literally describes every single human on this planet, and when I need people to focus on my disability or my disability is the relevant issue in the conversation, that verbiage is not helpful.
You are absolutely amazing!! I cannot imagine the strength that you have and your faith in God is really incredible. And your Mom is a total sweetheart!
Ceslie it was clear to me very on into your interview that you have the will power to move mountains. Thank you for sharing your thoughts and your wonderful personality with the world. All the best!
In a way I think the time she takes to communicate is comforting. When you think about it, there is truly no reason why an answer should take less than what, 3 seconds?, just to be the same as everybody else… I’m glad Celsie is comfortable with being different and taking up space in her own way - through time. And as mom said, it’s really a matter of respect. Very cool interview Chris.
She has the will and I have great admiration for her courage and I'm ashamed for me being so petty about my life. I see these videos not to be amused but to see how this teacher has the understanding to help others and loves everybody
I'm noticing a few videos on SBSK have extremely limited comment sections, I hope TH-cam isn't trying to remove all their comments again☹️ we love you Ceslie!!
Ceslie is a true shining light and an amazing lesson for everyone around her !! She has a wonderful and loving family. Thank you Ceslie doe sharing with us
This is something we should all do.. always give others time to speak for themselves.. never complete the sentences for them.. even if it is stutter or torretts or anything like that
I really appreciate that you left the length of time for responses in this video. It teaches me to be patient when meeting people like Ceslie
I agree. This channel means so much to me. I’m learning so much. It’s a blessing.
I have a friend with severe down syndrome who walks and do everything slow. Since day 1 i was impatient and mean to him because i thought he was a complete slow wit. I'm a client of a job program for people with disabilities and they shaped me to be more patient and tolerant towards people like him. Now I speak as positive and basic to him as possible because he's just not capable to understand complex concepts like neurotypical adults and that's ok. He's normal in my eyes. Why I behaved like a complete Karen to him since day 1? I myself decided to cloud my brain with so much negativity that it took me until yesterday to realize and understand that I need to rebuild my own house.
@@kangaroofuno growth like this should be celebrated. Well done!
@@kangaroofuno it's pretty rude to call somebody a "Karen." You claim that you learned to treat your friend more positively but then you use a woman's name as a pejorative. Just say you used to be impatient and now that you understand more you are no longer that person.
Mom and dad please start a “go fund me” or something similar. This girl deserves the top notch communication technology that’s out and available right now. It will add so much quality to her daily and especially social life. So many of us would be more than happy to donate!
I would donate. She did say she’s been using it since she was 3 and she is 26 so that’s 23 years she’s been using it and is comfortable with it but I’m sure she could get something updated that she can learn to use and like.
(Although I do not know Why she does not have a more advanced one, and do not want to jump to conclusions - of whether or not the reason is financial), ๛ THIS COMMENT IS SO THOUTHFUL AND KIND, I BELIEVE IT SHOULD BE PINNED TO THE 🔝 🔝 🔝!!!😊
I agree
According to her fb page she has tried asking for a new dynavox one from insurance and it was denied :( . They are appealing it, but there is talk there of a gofundme incase the appeal is denied.
@@Coastal_Ace Hi. I had a dear friend with ALS and she went through the same thing. She needed a special medical mattress and insurance said no. She was approved for the eye-gaze computer for talking, but it took too long to arrive before the nature of ALS took its course. For crying out loud, why is it so hard for some people who are severely impacted by any condition to have access to ALL the things they need to be comfortable and thrive? I hope Ceslie’s appeal is successful and swift. Take care & wish you well!
Thank you for not editing out the time between responses!
+1
Yes
Exactly. I was glad too that he didn't edit the gaps
Yes💜
So right
There are so many more natural sounding voice synthesizers out there nowadays, I'd love it if all these older machines could be updated with them.
She said she has used this since she was 3 yrs old....I wonder if it has been upgraded since the 90s?
She may like it as her voice, but I hope it has predictive text. If she's spelling everything out , I feel like Google could help
Of course there’s updated versions of these machines but they are very very expensive and getting the insurance companies to cover these machines is very difficult!!
I saw in the comments there are more modern devices with eye tracker option, wish we could all help her to get that one.
@@Asdfgqedfglo The insurance companies just don't want to help anyone other then their corporate donors
That DynaVox Maestro urgently needs to be updated. 38 seconds to answer a Yes or No question is simply unacceptable.
True
I noticed that as well - it desperately needs to be updated as those delays are insanely long. The available tech is much better now.
She is very determined and patient, it must take a lot of effort for her to type, so people better listen!
My disability is autism ptsd pdd nos
This channel, for years now, has taught me to be a better human. It's easier to be patient with innocence, but I love when you reach out to adults that have a story to tell about their human condition (not necessarily their disability). Ceclie has a story to tell that demands our patience.
yeah same!! it made me so much more understanding and patient. i started watching this channel when was around 8, and it helped me to not judge people because of their differences. i’m grateful to be raised with an open mind not just to disabilities, but to trans + queer people as well. videos like this help me to see many types of diversity, and help me to be respectful to everyone :)
😂😂😂 now I wonder where people are learning to be a terrible human
@@6omni6draconian6 some people were raised that way or just live such a horrible life they act like a horrible person.
@@imjustizzyy - I am happy to read your comment and to see how tolerant you are of our fellow human beings. The world is lucky to have you in it.
Well said
I understand assistive devices are deeply personal for the people that use them and people can feel a lot of attachment and even identify with the voice, etc. I do hope in the future she’s able to get a more efficient means of communication because clearly she has so many things to say. Best of luck to her.
As someone who is unfortunately very impatient due to anxiety, watching this encouraged me be patient because I was excited to hear what you had to say. Thank for helping us understand your disability and for being a friend. You are such a cool person! 💙
i totally understand! my anxiety makes me horribly impatient and i tear myself apart for it as i don’t want to come across as disrespectful.. but i am learning and this video is so educational for me!!!
What a wonderful comment! We all have room to grow in ways
I have ADHD, and have had to reassure my friend who needs this tech since a motorcycle accident in her 20s that yes, I am listening even though I fidget. She got very uncomfortable the first few times we conversed, but her discourse is so insightful and thought out, I personally wish I could gather my thoughts like she can. She's amazing.
No broken hearts 💔 here. Just love and compassion and lots of love 💗 for the family.
Compassion is something we all need. We all need understanding as well.
wow respect for her. it must be hard typing and feeling the anxiety that people don't take time for her. she is amazing!!
I couldn't imagine how frustrating it could be and how much time and effort it takes for her to type out what she wants to say. Would of thought there would be some pre entered common words like yes and no etc. I'm glad it was all left in for people to see how long it takes so people realise to be patient if they ever meet a person in similar circumstances
That’s a lot of work for her to answer a question. I’m glad he left it in because I didn’t imagine it would take that long now I know if I’m in a situation similar to this I will make sure to be patient.
Ceslie, I loved getting to know a little about you through the interview with Chris. I am sorry many people don't give you the time you need to communicate. In a busy world, where I live my life on a clock, I value any valid reason to slow down, & proper communication is the most valid reason of any I can think of.
Sweet comment. 😚
@@woollyskully1170 Absolute agreement 💕 lovely comment
Very sweet and true! 🤍❤
SMA has come a long way in the past 30 years.
My nephew has Type 1 SMA & was also diagnosed before a year old & was only given a 3 yr, at the most, life span.
He is 33 yrs old now & doing great.
He even survived having Covid & kicked its butt with flying colors!
I know the bravery it takes to live with SMA and my hat is off to you!
I was sexually assaulted as a teenager and my ptsd stems from that but my I have other diagnosis as well like autism anxiety disorder pdd nos which stands for pervasive developmental disorder not other specified and my last one is depression
Now thats one strong nephew
@@annmacgregor4231First of all sorry for what happened to you, tho my experiences and yours with life are different, I still think there is beauty in it one way or another. I m just a random guy on the internet but hey I wish you the best :)
@@annmacgregor4231 I hope you are doing great. Keep striving for growth. Best of luck to you.
I appreciate that you left in the time she was typing. Patience is so important and so many people lack it and because of that they would overlook the smart and amazing person she is.
Ceslie....you're lovely! Your parents must be extremely proud of you. That's what you call a winner, someone who let's their spirit shine despite obstacles.
This interview really got me. I couldn't help but cry and feel so many things. What a beautiful young woman and such a lovely family.
❤❤❤
@@AB-ur9rq 💕💕💕💕
That's the worst part of this disability, it effects them physically NOT mentally.
I can't imagine how frustrating that must be. I watch Shane Burcaw's channel (she shouts it out: "Squirmy and Grubs"), and he has stories about people assuming he is mentally impaired and treating him like a small child.
As well as there is a cure and in many countries, it's paid for by society, and available for free but in the countries where it's not it's very expensive.
Imagine knowing everything like normal human beings but unable to speak. It frustrates your mind and in turn destroys your mental health.
I so appreciate the typing time being included in the video's runtime. I need to slow down and be more thoughtful. I have people in my life who take longer to respond than I expect and my impulse is to jump in to fill the silence. Many of us need to become better listeners.
She wasn’t typing. At the beginning of the video he explains she pre-typed these. But normally she does have to type.
@@lillymurray8408 the pre-typing ends after the first 10 minutes in the video
Oh I love this video. My little sister has SMA type 1 and she's 12. She is semi verbal usually making sounds like "dun dun dun dun" (wedding March song) when she's talking about getting married. Some times is difficult for people, even me some times, when having a discussion. I appreciate the patience in the comments of people realizing how difficult it is to communicate for a lot of the people living with SMA. And to this woman, Ceslie, I'm praying for you to find a man who literally sweeps you off your feet but NOT literally takes your breath away. Keep being amazing! And to your parents. Thank you for taking such great care of her. I know with watching my parents how different and difficult it can be just medical wise raising a child with SMA is I couldn't imagine how much different it was 26-ish years ago. God bless you all.
I’m so glad you left the response time in this video. Ceslie you take all the time you need to say exactly what you need to say. Your thoughts are important and valid. We could all benefit from slowing down and actually listening to each other.
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I love that you put in the long length of time for the responses for some of these questions. She is using old technology in this vid but it gives other people that are watching the opportunity to be patient with Cecile and kind of get to know what it's like to communicate with her, and to also know that all forms of communications are indeed valid. 😉
I hope Ceslie now has an updated speaking program. You can just see she has a lot to say but the technology is holding her back.
Edit: I think it would also be a great insight to have another video of Ceslie, or someone who communicates the same way, and show what’s actually happening on their screen so we can see how it all works. I think that would help people understand why it takes longer for the words to come out.
So glad comments are back!! As soon as I heard I ran back to this video to say Ceslie you are so lovely and I learned so much from you. Thank you for doing this video and giving us the chance to meet you!!
I agree. While there are toxic people in this world I love the SBSK family. We all love and support one another. Glad to be able to converse here. 🙂❤️
I love that you trust your audience enough to leave the comments open. I noticed most times when trying to learn of certain conditions, comments are usually disabled and I understand why. It's just refreshing to be able to express opinions, ask questions and give support.
Kudos to Ceslie (what a gorgeous name BTW) and her adoring family.
I'm a firm believer that you can get through almost anything in life with support and love. Ceslie has this in spades plus she has an indominable spirit.
She's doing so much with her life in spite of her disability; she's really inspirational. Thank you, Ceslie.
I can’t imagine how frustrating this must be, I’m sure it’s a much different perspective for us than for her because she’s always lived with it but regardless she truly has more patience and strength than I could hope to
Have you encountered a person with a lot of diagnosis well I will tell you all of mine my name is Molly and I live with autism ptsd pdd nos standing for pervasive developmental disorder not other specified my age is 30 years old I have fits of rage when I hear someone with autism is brutalized by police and it makes me so mad I feel like defunding the police forever so my anger goes from cussing to screaming and venting to get my point across
I imagine it must be frustrating for her to have people around her talking and by the time she gets around to giving her opinion on a topic, the conversation has progressed much further. How frustrating I hope she upgrades her voxby soon
I love this video, a big reason being it helped me realize that the patience part isn't what I lack; it's the idea of being comfortable with SILENCE + it not feeling awkward to me, as if I *have* to fill the air with noise constantly! Thank you so much for your courage, beautiful young lady!😇🙏🏻❤
Beautiful 💕
Ceslie I learned so much from your video. While I haven’t yet met someone that used a device to assist them in speech, I now understand what to expect when waiting for a response. It would be worth the wait to talk with you and I think that makes connections with you even more special and delightful. I’m so glad you shared your story with us. Thank you.
❤️❤️❤️❤️ I love this community. There is so much kindness here.
@@EricaL2024 humans are good by nature, it is just that we forgot
I want to hear what she has to say. Even if i have to wait.
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I really appreciate the unedited text communication, this world is too fast paced and we just need to learn to be patient. Thank you Ceslie.
Having that patience to allow someone to create a response is so important esp for those who have disabilities that can't talk quickly or can't talk at all and need assistance.
I wont deny that hearing her medical instruments assist her breathing is oddly satisfying to listen too, considering I work in a nursing home I've learned to appreciate it a lot since these products are there to help keep someone alive. Bless you Ceslie you're a beautiful person inside and out.
Hi Ceslie, thank you for sharing a bit of your life with us. You are an intelligent and beautiful young lady. I enjoyed that the video was unedited and I was able to experience what a conversation with you would really be like. You are awesome.
I stutter. The section where Ceslie took some time to answer "I prefer open-ended questions" definitely hit me hard due to the length of time for the answer. it's obviously not the same, but i've had cases where 10 or 20 seconds or more may go by. i turn super red and frustrated as it just seems hopeless that the words will ever come out. I've had people ask me "what should i do when you stutter?" I always answer with "what do you do when someone is speaking to you who doesn't stutter?" they usually say something like "just listen, i guess." and i'm like "same rule applies." obviously different situations may dictate different responses, but i imagine there are few things Ceslie enjoys more than when someone who doesn't NEED to be (not family, doctor, etc.) is genuinely interested in what she has to say and affords her the patience and comfort needed to communicate fully
One of your best videos! Allowing all of us to experience Ceslie's communication process was fantastic. Ceslie, you are an amazing woman and are definitely living life to the fullest! God bless you and your family.
I love that you included the real time speed of her responses. She seems so genuine and sweet and I hope she finds the relationship she is looking for. She deserves it!! We love Ceslie 🥰
I appreciate that you left the length of time for her responses in. It teaches me I need to slow down. Take a breathe and listen. Such wisdom and insight Ceslie has!!!
Ceslie what a pleasure it was to meet you, you are a true inspiration already putting the word out for others who have disabilities like yours.❤
Really sad to see that an insurance company would turn her down for an upgrade on something that has no doubt come a long way in technology. She definitely deserves that chance to have a better life. This by far was thee most calming and educational experience I have had yet on this channel.
Watching this was an amazing lesson for me. I am challenged with ADHD, not interrupting people is sometimes hard.
Watching this interview made me incredibly humble and determined to practice patience. I am glad I did for you are indeed a bright, sparkly, strong and smart person 🙏💚
You made it through this full video with ADHD? 🙌🏻👏 That is awesome! I have 3 ADD/ADHD people in my family and I teach many: I know full well how hard this was for you. Patience and perseverance are a great combo!
@@pinlight97 haha thnx, yeah it was a bit of challenge in itsself but i feel whatever wiring one has, one should always challenge yourself to braintrain and overcome it. :)
That length of time really mean a lot to understand the real value of words and communication. Thanks Ceslie a lot and best wishes ❤️ You and your family are awesome 🙏
i was impatient at first, but then i felt actually calmed by the breathing noise (or maybe it's a different machine with a rythm? not sure). There was something calming about that, so i was more more than happy to wait for your answer, and that while in the middle of an anxiety attack lol. You are very inspirational! i would love to be friends with you, such a bright personality.
Caslie is such a sweet and smart young woman.
I believe she will be happy for the rest of her Lifetime, ❤
Ceslie is such an incredible young woman!!! She IS so bright and shiny, and beautiful!!!! Her family is so loving, and she has such a wonderful way with words!!!! Ceslie you most certainly are an inspiration to and a role model for others!!!!
This show has been good for me to watch. It's really opened up my thoughts and sensitivity toward others. I always have been sensitive since I have my own disabilities, but it's taught about what others go through and their needs and wants.
what if youtube incorporated something like positive human emotions and discussions into the algorithms, perhaps channels like this would reach more people? things like this could literally save the 🌎🌍
Profits📉📉📉📉📉(literally only slightly) but that’s the sad reality
It's really important and amazing that you leave in the full time it takes her to type in her answer. Most people don't realize it can take multiple minutes or they don't have the patience to wait... the girl I work with has rett syndrome and she sometimes also takes multiple minutes to give an answer and many people don't take the time, it really makes me happy to see you show the world this!
I don't understand how she's able to be so quick with communication. That's awesome. I usually can't come up with such a good verbal response that quickly, even without having to use technology as a middleman. She's so cool!
Good God, I really appreciate the extended pauses of patience to allow this person to express themselves. It's so important, especially in a world of such impatience. Thank you, Chris, you are destined for unimaginable rewards in God's Kingdom and the eternity. This is serious stuff, man, serious.
I loved that they left in the real time it took to tipe out the answer. I hope some day she can use more advanced technology to communicate as it seems like a big problem that people did not give her the time she needs to express here answer!
Wait, the comment section is back? Finally! Thank you for this video and thank you Ceslie, for allowing us get to know you.
What an amazing, lovely, smart, kind, and determined person she is. I bet it’s very hard an I’m sure a bit vulnerable showing the world who you are an what you go through but it does show how much of an awesome person you are. It shows how no matter what odds we are up against but with hard work, being kind, patient, and loving will move mountains. Thank you so much for sharing. 💚💚💚
We need to be grateful for how blessed WE are. This girl is chugging along, if she can do it. We all can do it.
Thank you for sharing your story Ceslie, it was a joy to get a glimpse into your life!
When She listed her hobbies I found out she likes pretty much everything I like! She follows squirmy and Grubs too :) I’m hoping For the best for Ceslie!
I love your name Ceslie! I like the way you did your makeup. I think sparkly eyeshadow is fun.
this channel has made me so much more understanding and patient. i started watching your videos when was around 8, and it helped me to not judge people! i’m grateful to be raised with an open mind not just to disabilities, but to trans + queer people as well. this helps me to see all different types of diversity, and shows me how to be respectful to everyone :)
What a cool mom !! Ceslie you are so bright and I feel your positivity, it is infectious !! ❤
What a beautiful young woman. I would LOVE to be her friend, i hope she knows people would LOVE to meet her, what a sweet girl
These videos are extremely valuable. If you've never communicated with someone like Ceslie or in a similar method, it's hard to know how to even approach it. Or to even begin to imagine what kind of person they are without the typical cues such as facial expressions and tone of voice. Getting to know who Ceslie is is a wonderful opportunity. I would love to know more about her. Thank you Ceslie for allowing us to know more about you. And thank you Chris for helping us to connect to others we may not know how to otherwise. ❤
Wow I enjoy seeing how patient you are with others … I can’t recall a time where I’ve ever sat that still for any reason.🤦🏾♀️
This is absolutely extraordinary seeing a motionless and empty looking individual inputting large words and clever sentences that really express herself and her life, I have never seen anything like it, and would consider it a phenomenon to humanity
This video carries a wonderful message that Love is patient. It only takes love to be patient and give time to communicate with Ceslie. She is amazingly intelligent.
She's such a bright, intelligent, woman. You rock Ceslie 💚
Ceslie watching this video and seeing how you've overcome all the obstacles in your life is truly inspiring. You're amazing in every way and I hope you find your soulmate soon! He's out there, you'll find each other eventually. :) Some people might be impatient with how long it might take to get a response, but it's truly refreshing in my eyes. People spend their lives rushing all over the place, never taking time to sit down and breathe.
I don't have a disability like yours, but I do struggle to express myself with words. It takes a bit of time, but when people like you and I do speak, I guarantee it's something worth listening to. Don't let anyone ever tell you otherwise.
Thanks to your video I will be a lot more patient in future, you are a lovely young lady with a lovely family. Xx
So glad I found this channel.There is so much I'm learning and it's been a real eye opener. Cecilie you are beautiful. And your parents, are so incredible. God bless❤️❤️❤️
What a wonderful person. I would love to see some form of eye tracking tech developed for someone such as herself. I think that would assist in her ability to communicate with others. Having said that, the "wait time" between her responses was not only a helpful tool to understand how it is to communicate with someone with a diagnosis like this one, but also gave an appreciation that sometimes it simply takes longer to communicate even simple responses.
Patients is a virtue, but it isn't a God given one. It's a virtue that must be exercised. Differently abled people like Celsie remind us of that. Humility and patients MUST be exercised.
I love Ceslie! How amazing is it that she defied the doctor predictions after she was born! (Amen!) She has a beautiful spirit, and is so easy to love and get to know. What a special girl, and I wish her the best!
Edited to add: I think it's a wonderful learning experience, too, that Ceslie's communication time was included here unedited. My takeaway from this video is we should slow down (A LOT!), otherwise we could miss out on meeting many, sweet, kind, thoughtful people like Ceslie. And like Mom said so nicely, it’s also simply giving people the respect they deserve.
Take care everyone!!! Thank you for this video.
Ceslie is pretty and you are inspiring and also have a bright personality.
I myself have also learned so much from these videos, especially about patients it opens up a whole new world. I really appreciate the time and effort that these people put into this the passion the love, certainly makes you appreciate life much more. God bless you on continued success with your videos
Did she type all of those responses out letter by letter? Because that is so impressive!! She is so patient.
You are an inspiration sweet girl. You’ve taught me so much just over the duration of this video. Keep being a rock star.
Keep going Ceslie, you seem like a wonderful and kind person! I wish you all the best things in the World!
I once completely lost my voice for almost 9 months. It taught me how important it is to be able to communicate with others and interact with them. She is amazing to use her patience and persistence to talk using her computer. My daughter-in-love's father has SMA and is losing his ability to talk. He will be needing such a computer.
Thank you for letting me experience the length of time and showing me how important it is to be patient. Ceslie must have an amazing amount of patient to do this all the time. Thank you Ceslie.
Im the kind of person who likes to doodle or fidget while having a conversation (its the ADHD) and it actually helps me focus more on what the other person is saying. I imagine it would be so relaxing and pleasant to sit with Ceslie and talk at her own pace and have some tea and doodle or hold my kitten or anything like that 💚💚💚
Those moments where Ceslie is typing and you are waiting for the answer are just beautiful. These must be among the best and most important moments one can have in life: just two people being there and communicating/ connecting to its fullest. I can see Ceslie is making her parents the happiest people. When I want to speak too quickly I will remember Ceslie.
Hi everyone: It's so nice to see you all again on TH-cam. I hope to meet you one day. Take care and stay safe.
Love love love this interview!!! I know it's not the same disability than her, but I worked with someone who is in a wheelchair and it takes her more time to do everything, I won't go into details to respect her privacy, but I appreciate that you left her reaponse time unedited, people don't get how much work it takes for some people to communicate, it's important for people to see it. We, people with disabilities, physical or not, need so much more work to get the same things done, we are seen as weak, but we are just, in fact, stronger and more resilient and perseverant. Im so happy to have met such a wonderful young woman through this video, wish I knew more about her 💖
We all are learning more from her than she from us. Ceslie, thanks for coming to Earth and teach us a lesson of life
She’s great! Being able to communicate like that is awesome.
He is so kind, understanding and handles awkward moments amazingly I admire that!
What a great gal!! She’s just a regular gal in that body. She would be great and easy friend. Glad you interviewed her and her family. What a great family
Her sassiness is beautiful. Having patience is key and is absolutely important when having any communication with anyone with a disability
These parents of families like this are just so incredible. They know what's really important in life. I'm so jealous. I wish nothing but the best life for them and all the happiness and health they could want and need.
I love your job! u show people that all people with different abilities are just like everyone else! Because they are! I hope your channel continues to grow! And that you continue to make a better place of this world! She's a wonderful person! She is an inspiration, because she can do whatever she wants! I'm proud of her, even thought i really don't know her! :)
Say disability not different abilities please. It is not a word to avoid.
@@theboujieproletariat yeah, i know it’s not a word that should be avoided, it’s just, that, well, she has different abilities, or am I wrong? There’re too many ways to say it, and all of them are completely correct. I used that word not trying to avoid the other one, just expressing my-self in a different way, and I don’t think that should be a problem.
@@gay.faerie1111 "Different abilities" is a euphemism which adds stigma to disability, despite some people's well intention. The issue with "different abilities" is that it literally describes every single human on this planet, and when I need people to focus on my disability or my disability is the relevant issue in the conversation, that verbiage is not helpful.
You are absolutely amazing!! I cannot imagine the strength that you have and your faith in God is really incredible. And your Mom is a total sweetheart!
Ceslie is just beautiful and what a loving family. Thank you for sharing.
Learning to be a better listener. 💞Thank you, Ceslie. Thank you, Chris, for doing what you do.
Sending so much love from Ghana ❤️❤️❤️
Ceslie it was clear to me very on into your interview that you have the will power to move mountains. Thank you for sharing your thoughts and your wonderful personality with the world. All the best!
In a way I think the time she takes to communicate is comforting. When you think about it, there is truly no reason why an answer should take less than what, 3 seconds?, just to be the same as everybody else… I’m glad Celsie is comfortable with being different and taking up space in her own way - through time. And as mom said, it’s really a matter of respect.
Very cool interview Chris.
She has the will and I have great admiration for her courage and I'm ashamed for me being so petty about my life. I see these videos not to be amused but to see how this teacher has the understanding to help others and loves everybody
I'm noticing a few videos on SBSK have extremely limited comment sections, I hope TH-cam isn't trying to remove all their comments again☹️ we love you Ceslie!!
Ceslie is a true shining light and an amazing lesson for everyone around her !! She has a wonderful and loving family. Thank you Ceslie doe sharing with us
Ceslie is an inspiration 🙌 to all. She's very talented and beautiful.
I love that we all got the opportunity to wait with you while she set her response. A lot of videos would have skipped.
This is something we should all do.. always give others time to speak for themselves.. never complete the sentences for them.. even if it is stutter or torretts or anything like that
Ceslie your faith in God is inspiring ❤️ thank you for sharing a portion of your life with us (:
Id love another interview with her and more answers to questions
Love Ceslie, she's amazing, thanks for sharing! I hope this video gets lots more comments soon!!