The Inability to Communicate with Rett Syndrome 

They're idiots for wasting their lives taking care of useless pieces of meat.

@@JustSomeAussie1 what a vile thing you are. Your comment made me feel sick!!

@@louloo5286 Boo hoo

@@JustSomeAussie1 no im not crying. Evidently you're the one crying out for attention, trying to troll online. I feel sorry for you 😘

@@louloo5286 I'm not trying to troll, what I said is what I believe.

I agree with you, the eldest girl looks so sad at times because she can’t communicate what she’s feeling. I’m so glad she has a wonderful mum and carer though, they really love and care for her

@@sophiee9426 but this eye computer is great

willem H we don’t care about you stupid computer

Yeah and another thing I don't like about it is that people with disabilities tend to get babied. Like I don't know everyone's specific family situation, but I feel like sometimes even their parents and caregivers talk to them like they're toddlers, only ask them simple questions, etc. and don't trust that they could be a lot more mature and intelligent than they seem. I know it's difficult because these girls can't communicate very easily, but just in general. (But I can see that these moms understand their children's cognition better.) ~:~

That’s locked in syndrome, not Rett’s. Rett’s is a reversal from normal development at 2/3 more or less, then a regression. In locked in, the intellect is often intact. In Rett’s, the intellect decompensates.

I can't imagine how awful it must be, I have eds that's not a patch on this and that's frustrating when I want to do something I can't. This poor women struggles so much to even communicate. Someone in a Facebook eds group said she couldn't think of anything worse than eds and it's! I could have wrote her a list of far, far worse things. When she was sat calmly and they wondered if she was going to have a seizure she just looked like an average young woman, just sat there thinking aimlessly or watching the world go by

K Nogne that’s exactly what I was going to comment. And her episodes seem as those of someone who is frustrated because they can’t do what they KNOW what they’re capable of. It’s so sad.

I can’t imagine. I’m disabled in several ways. I’m diabetic,deaf,epileptic,and I have major anxiety and depression.

At one time I was sick in a way that I couldn't communicate but in my mind I could hear myself and what I wanted to say but just couldn't get my voice and mouth to do as I wanted. It's so sad that i know inside she is completely wise and smart and wants to say so many things

I agree -- you can see that 'there's someone home' for sure. Though her mom is doing an amazing job, there are several times in this doc that her mom speaks to Sarah like a small child. Like you said, it must be so frustrating! I also wonder about the competency of Sarah's carer. It worries me that she thinks benzos are painkillers. She even lists morphene as a benzo (it's an opiate, and a common one at that). I wonder what kind of training she's had.

Why are you arguing with a disabled four year-old??

@@reidchambers2521 likely, they meant that they needed the child to do something, and as four year olds do, they refused 😂

@@reidchambers2521 😂 that made me laugh. She means it well.

@@reidchambers2521 have you met a 4 year old?

Yeah her sun glasses and dress and hair color were seriously cute! Pretty girl

Isn't invalid sorta.... old fashioned and odd ?

@@marisaelyse82 I have no idea what the current term is. Appropriate language seems to change so frequently. I meant no malice by it.

@@laurafrakinroslin and new research indicates rett girls can be of completely normal intelligence, it’s so important to let these girls feel respected.

s i d e r a I wonder if she likes music. Put some headphones on her? So sad not knowing.

What I googled claims there is no way to test for intelligence with this

They were adults also.

I remember reading about a girl with Rett who sounds a bit like that on a US Rett syndrome website. Her name is/was Katie Hallstrom. Stopped talking about age 4 or 5 but never stopped walking. Is this the same person?

Matthew Smith no it isn’t. My cousins name was Carrie and we are from Canada. I do find others stories interesting tho

I apologize for butting in, but is it possible that she had Childhood Disintegrative Disorder(also called Heller's Syndrome)? Both Rett and CDD appear to be very similar, but I couldn't help but recall that loss of bladder control is one defining characteristic with CDD, as is the usual later (4yrs old as you noted) regression. May Carrie rest in peace.

Honor Ember no she was tested. Plus my uncle and unity both had genetic testing done and found they both carried the gene for it. They told them if they had another girl they would have had a 50/50 shot of another one being born the same way.

Amanda B obviously you have never been around people with disabilities. She wasn’t being kept alive with machines. My cousin had her own loving personality. She lived of her own will. It was actually her bowel that burst and she wasn’t strong enough to survive surgery so they made the choice to let her go. Until you live with or around people with disabilities you have no idea what you are talking about. Wow ignorant.

4 years ago. I've worked with a couple more girls since. The light in their eyes when you finally reach them. It is sad seeing them trapped in their bodies... But when you do reach them they can flourish still. One girl who did a presentation for the class I was in has retts. She was incredibly independent in all ways she could be. She managed to graduate highschool in a normal program and get accepted into university into a statistics program. She needed a lot of supports, but once she had them she was fantastic. She used a mixture of cards and eye gaze typing to communicate. Her biggest wish was that people don't treat her like an invalid just because her body doesn't work and instead be patient and listen to her mind.

Same as barcroft i think barcroft tv is exploitative

If they have an mcn (multi channel network) basically like a manager they got to keep their comments. Sbsk didn’t wanna sell out which i comment then for. #BringBackSBSKComments

PeachyPanda Chris should’ve visited Kendyll and Sarah.

i think it has to do with the name of the channel unfortunately as i believe most of the sbsk audience are adults.

PeachyPanda indeed it’s crazy

She needs to grow up and act her age!

Obama Binladon Please don’t judge people if you don’t know them. It’s very hard not being able to do the things everyone is doing. It’s physically and emotionally draining for them.

She needs to stop acting like that and get a job

Obama Binladon How is she supposed to get a job. Yes, she may have full mental function but there is basically not job that she could do. The fact that they hire someone to help take care and look over to just do basic functions, in fact proves me right. I’m not 100% justifying the way she acted, but think of how infuriating it would be to have to figure out how to communicate you basic needs without being able to talk or move your body in ways you want it to while everyone else around you can do these simple thing, almost without thinking.

Maya Miller thats a troll you're arguing with, his goal is just to make people mad and he knows it's BS, so dont give him any attention or any more of your time 😊

That’s what I was thinking as well. I have a child that has them often

Yes there called petti Mal sezzures

Yeah they look like absence seizures to me. I have epilepsy but only ever have grand mal seizures - but the people I've met who have this type do this exact same thing, their muscles freeze up and they just stare.

> "Could Sarah be having absent seizures when she stares vacantly into nothing?" My brain injury also gives me "grey-outs". Very rarely do these grey-outs happen to be black-outs (unconsciousness).

@@PixelTheExtraTerrestrial My son had them and the strength that was in his hands was incredible, one time when he was having a petti mal he actually went into the bathroom and turn the cold tap so hard he broke it, he had no idea that he was doing this, i thank god it was the cold not the hot tap. When he was having them i would just lead him gently to his room lay him down until it passed

Penguin Roll I noticed that too

Everyone saw that - how couldn't you notice? But what does it mean?

@@user-jq8qv4yx4h semicolon tattoos started as a subtle note to suicide prevention. That is, "she could have chosen to end her sentence [life], but didn't" is how they describe it, as that's how you use the punctuation. It's to symbolize making that choice to keep moving, keep living, there's more 'story' for you just waiting... It's a symbol of hope. You can look up Project Semicolon to learn more. It was started by a young woman who lost her father to suicide. Hope that helps.

Lisa Moon Ok, thanks. I did look further in the comments and found a reference to suicide, so sort of figured it had something to do with that. Do you get the tat if you had tried suicide and failed?

That's sounds like a lovely idea!!

I suppose it is pretty tough being a caregiver. it does pose a lot of challenges. But I'm sure once you come out of all it, you'll learn to become stronger, and stronger for it too. I'm sure you'll learn to love what you do, in time. Faith and patience is the key to all situations. You as a caregiver, God bless your kind soul

Wow, your patient can do a lot! I work as a night nurse for a teenager with Retts. She cannot walk and has no voluntary movements. She pretty much just grabs at her hair if she’s bored or agitated. ( which is most of the time) And she wakes up several times most nights and whines until you take off her leg braces and Bipap. I don’t know why her mom doesn’t want her daughter to take any sleep medication. Trazadone sounds like it works really well for your patient. I pretty much have to swaddle my patient to keep her arms from flying all over place and her banging them against her headboard. Or I weigh her arms down with pillows to keep her from rubbing her eye or pulling her hair out. Her mom says there is going to be a cure for Retts in 3 years. I really hope so!

Katrina Olsen Suggest for her mother to have a weighted blanket when she sleeps. These used to be crazy expensive, but the last year or so, they started to be available from more shops online, and the price has dropped considerably.

@@katrinaolsen2444 Please minimize messing with her arms as much as possible. Pulled hair is an aesthetic concern whereas the hand movement is a sensory stim they NEED to do to process the world as with other autistic-type motions. I am someone who has these kinds of motions and people are far too hasty to underestimate the neurologial harm it does to interfere.

Nina Sørum She has a weighted blanket. It doesn’t help.

Ditto.

I understand.

Jennifer Dixon yes! I also have seizures and I also get trapped in my body. My eyes will be open but I can’t move at all but make noise. It’s terrifying but I know it’ll go away, I can’t imagine what it’s like for it to never stop. It’s must be so hard for the parents and girls. I second the weed use also! If I didn’t have weed my last few years would be miserable. Thank god is legal in my state. I hope it becomes legal for all Americans! Best of luck (:

Jennifer Dixon CBD oil is legal. I get mine from a wonderful company in Kentucky. They ship anywhere. It has only trace THC, won’t get you high. If you’d like more info, tell and I’ll post some links. ❤️

@@JaimeMesChiens More info on that would be great!

Jennifer Dixon bluegrasshempoil.com is a family farm, processing plant, and laboratory on site. The THC is within the farm act limit. I don’t want to say more here, but you may email me LibbyHussein@aol.com and we can certainly discuss further.

I've never heard of anyone else with conscious seizures like mine. Makes me feel a lot better about everything. Thanks so much for commenting.

Sarah doesn’t have the maturity of a normal 24 year old. And she’s not being “patronized”. Her mom said she has no regular sleep schedule and she apparently doesn’t get a whole lot of sleep. No living creature can function without a regular sleep schedule. Her mom also said she has chronic pain. Which is distracting to Sarah too. Sarah very likely has normal intelligence. But intelligence and emotional maturity are not the same thing. She isn’t going to have the same maturity that a person who isn’t profoundly disabled has, because she cannot do anything for herself. Girls and women with Rett don’t have any control of their muscle movements. Particularly their hand movements. Generally the only things girls and women with Rett can do is pull their own hair, scratch at their own faces, and bite themselves. Most Rett patients have arm braces put on so they won’t hurt themselves.I was a Nurse for an 18 year old girl with Rett Syndrome. She received a lot of physical therapy and she was fairly healthy. However she didn’t ever seem like she had any interest in anything other than a couple of different tv shows that were created for preschool age children. I tried to get her interested in shows that were for older children and teens. And she’d scream until I put on one of the tv shows that were created for toddlers, that she liked. I’ve seen videos of other girls with Rett who are really responsive to their families. And it’s very obvious that the girls love interacting with their loved ones. That wasn’t the case with the girl I took care of. She sometimes would laugh at the show she was watching. But that was the only time I could tell she was enjoying something.

Rett Syndrome is not caused by oxygen deprivation of the brain. And Rett doesn’t happen at birth. Rett children appear normal at birth. And a lot learn to walk and talk. But then they regress. If they have Atypical Rett, they may continue to walk and talk some. It sounds like your cousin’s daughter had a birth injury that has caused her Brain Damage.

@@konjurekatrina I never said or implied that Mikayla's Rett's was caused by the oxygen deprivation, it is a statement on it's own, hence the full stop after the statement. Children with Rett Syndrome *_do_* technically have it from birth, the mutated gene is already "there" in the body *_from_* birth...I dare say developing during gestation (since tests for the gene can be done prenatally). It's not like it gets contracted from someone else, like a cold or flu virus or something, they don't suddenly "catch" Rett's - the way you make it sound. Since a baby doesn't really attempt to do/can't do and isn't aware of much, within the first few months of life, Rett's is overlooked. They look, and appear to be, like other babies. So technically, they are *born* with "unseen" (if you will) mutated gene...and the symptoms manifest slowly during infancy, from about 6 months old. She didn't walk, talk or sit up on her own, but did communicate in her own way and so, wasn't "brain damaged", she was alert and aware. Anyway, very sadly Mikayla passed away last year in April, aged 7...R.I.P. beautiful girl 💜💜💜

@@veesea8889 I’m so sorry that Mikayla passed away. That must have been devastating for everyone involved. I know that Rett is from a mutated gene and isn’t something a child “catches”. What I meant was children don’t usually show symptoms of Rett until 6 months to 2 years old. I have watched A LOT of parents describing their children and how their child was diagnosed. ALL of the parents described that their child SEEMED normal at birth. And that their children had started to talk or at least say words. And many of them started walking as well. They ALL said their children noticeably regressed. From what you described, her family were aware from birth that all was not right with her. That is not how any of the parents I’ve seen discussing their children described their child. They all thought their child was developing normally until they noticed their child started regressing. And just because someone has had a brain injury, it does NOT mean they aren’t alert and can’t do anything. My cousin’s husband was in a motorcycle accident when he was 17. He spent a month in a coma. And he has a permanent brain injury AKA brain damage. He can walk, talk, cook and do a lot of things! He fathered 4 children and helped raised them with my cousin like any other couple raising children. However, he lost his sense of smell because of the accident. So he didn’t stay alone with the children when they were infants because if there was a fire, he wouldn’t be able to smell it and take immediate action. He can drive locally, but highway driving makes him dizzy. He needs help staying on track when they are doing something that has a time table because he gets easily distracted. Two of my cousin’s children have graduated from high school and are at 4 year Colleges/Universities. He is a wonderful father who raised wonderful children. Again, I know what causes Rett. I was a Nurse for a teenager with Rett. I did a lot of reading about Rett. I also watched families talk about their children who have Rett, right here on RU-vid.

...

Jane Hakanson that my friend, Nick Chisholm. He’s a weight lifter. He can communicate and recently got married. He’s a very cool guy. He incurred a sports injury that caused damage to the area of the brain responsible for speech. He lost his ability to speak, but not to communicate. I love that guy!

Murder most horrid

​@Jane Hakanson Https://ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-nQYfvLTId0Q.html > "Locked-In Syndrome: Nick Chisholm " > In 2000 Nick Chisholm had a stroke after a game of rugby. > It left him with locked-in syndrome which means his body is paralyzed but his mind is aware and alert. Unlike most stroke victims, Nick was not self-inflicted by poor diet, poor exercise. It is similar to my Traumatic Brain Injury. These videos are both from New Zealand.

Rett can affect intellect. Some people with rett have a severe intellectual disability and others have normal intelligence, and of course there are the in betweens.

I was wondering the same thing. If I was 23 and i had to be there...

It must be hard to figure out what exactly her intellectual level is when she can't control her body well enough to respond to what people say. I'm so glad she has the eye gaze tracking computer to help.

Have you ever read the book "Out of my Mind" by Sharon Draper? It's actually about that exact thing, only replace Rett Syndrome with Cerebral Palsy. It's about a very intelligent girl who's treated as mentally handicapped due to being unable to communicate normally, until she gets a speech device

You may find, unfortunately, that there are no other classes in the area, that Sarah can attend. Something is better than nothing xx

Tanya Brown I have to wonder if she lets her listen to music or anything stimulating. She seams so normal exeption of her care.

WhiteGirls WearWigs2 that must be terribly hard at times for you. I have a lot of admiration for moms who have children with disabilities and their strength. My heart goes out to you. Just know you are not alone. There are other moms out there dealing with the same. Please do not forget to take care of yourself too.

sandi kieffer thank you so much for taking the time to say that it's so nice to hear someone sympathize. Most days are extremely hard and i had no idea what kind of patience and love I had til I had my special needs child. Its like I live in a foreign world all the time it's hard to see other families enjoying their lives clueless to how blessed they are. My son is such a loving child though through all his struggles. I am blessed because he is so innocent and doesn't have a care in the world. He doesn't know any of the worlds worries which is great to me.

Your son is not the only one who is special in his family. You are just as special. He is a celestial spirit who doesn't need to be tested here because of how valiant he was before he came to earth. If you could see the angels that are around him (and Sarah) wouldn't that be great! Kudos to you! (I hope this didn't come across too religiousy, I just wanted to give you a great, big pat on the back.)

Check out Fathering Autism, I know their videos have helped many. Best of luck Ashlyn, stay strong!

Airell Skye yeah I love their channel they are a great family their daughter abby reminds me of my luke in some ways

I mean she’s her mom so maybe she knows best how she reacts to different ways of speaking

They are not "all there cognitively" in the way you mean. Intellectual disability with a developmental age in the toddler range is part of Rett.

It's really heartbreaking

Well, it does say in the Bible that God is the one who creates all the evil, so... pretty sure he's not gonna fix this, if he's the one who did it. That little book also says it's wrong to kill, so the only option the parents have at this point is to help their children the best they can in their short years on this planet.

I was surprised when Sarah's mum said having eventually a diagnose of Rett syndrome was terrifing but a good thing, because at least it wasn't her. Surprising because if she was the problem, Sarah would have been traumatized but not so extremely affected. It would have been better for Sarah if the problem was her mother and not the Rett sindrome!

idk it seems so odd to me that she has dyed hair. she can't ask for her hair to be dyed so why did they do that?

Sarah seems more-than-sort-of sad.

small pener Why not? My brother is nonverbal, has severe autism, and has Down syndrome but he still rocks a badass, easily-manageable mo-hawk lol

@@galaxysnot6276 I just mean....how do you know he wants a mowhawk? And how do they know she wants dyed hair? I'm not trying to be rude I'm just intrigued! Idk your brother but maybe he can gesture in some way that that hairstyle is what he wants, but I'm not so sure about her idk idk

@@likklesmellyduck if you watch the video you'll note that it's repeatedly said that Sarah is intelligent. It's likely she wanted the dye. Just because she can't verbally ask for something doesn't mean she can't ask for things. I mean hell in the video she asks to be taken out of her chair and back to her room.

chulaida I’m so sorry. 💔💔💔

Are you Dr Land from MD?

I can only imagine after watching this. Bless your heart. Praying for you and your daughter

chulaida if you need someone to talk with, please feel free to email me mavanesi@yahoo.com hope I can help in some way by being a listening ear

I'm so sorry for your heartache.