Jesse And Her Day/Night FlipFlop - Circadian Rhythm Sleep Disorder - Blindness/Autism
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- Опубліковано 6 вер 2024
- Jesse, who was born blind, has autism and intellectual disabilities, gets her nights and days flipflopped due to Circadian Rhythm Sleep Disorder. In adults, this is typically called "Non-24". Mom shows what its like when Jesse gets flipflopped and stays up much of the night and sleeps during the day.
Jesse was adopted from Korea when she was about 2. She is now 18 years old. She was a resident of Holt Ilsan Town and was about to be considered "non-adoptable" when we asked to adopt her.
Music: EpidemicSound.com
We Should Start Right Now by Loving Caliber
Bed Time (Traditional)
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Oh my goodness, Aidan does this as well!!!! Bless her! I am often up in the night with Aidan while he jumps on his trampoline or has a snack.
I have been wanting to talk to you about the blindness/ autism combo! It is a doozy and it seems there is no reliable testing to do even though there is a diagnosis. I can't get Autism on her eligibility and feel we get left out of certain services she should be receiving. Services are needs based, but if the need is not understood, then what? I am thankful to have a mom here who can relate! Sending love! ❤❤❤
@@SixBlindKids right, I totally get it!!! Aidans diagnosis is "institutionalized autism" which a lot of therapists and teachers just dont know what to do with it. He also misses out on some services that I think he could greatly benefit from. We recently found Children's Rehab Services (maybe you have one in your area) and they are totally reevaluating him and getting him speech, OT, and physical therapy outside of the school system. And they are catering to the autism aspect....which is great because typical therapy for blind children is not effective with him.
@@TheCircuses Thanks, Kat! I will check them out. Autism is clearly Jesse's primary disability, which is what people can't seem to wrap their brains around. Blindness is so huge, that everyone thinks everything has to do with that and it does not. Getting services at HOME is critical and we have not been able to figure that one out yet! She recently got a waiver which should help. But first, the powers that be have to understand the need. These things are vital as they transition into adulthood so that parents are not left with the continued overwhelming burden of just trying to convince doctors, teachers, and administrators of the need. These behaviors require ABA therapy in home. All I have gotten is a consult at school which, frankly does nothing. Recent research has shown me that kids with ROP usually have Autism. We may be able to get genetics testing with this information. Genetics cannot ve used to diagnose ASD, but it can be used to confirm or rule it out apparently. That is how we discovered Obed's and got it on his eligibility. I think most people would be surprised, as we were, to hear that there is no test for ASD for kids who are both blind and have ID. Yet Autism in blind kids is common. It would be nice if someone could explain this to the schools, so mama bears didn't have to fight so hard! 😉😊❤ Sigh.....
@@SixBlindKids I can't sleep at night because my severe aniexty but during the day sometimes I can because it nosey during the day and everyone doing there thing I live in a block of flats
@@SixBlindKids our in home services were only granted for my son after he had an inpatient stay at a ccis hospital 😭😢 which was literally torture for all of us. Can you reach out to NAMI to help you find resources in your state? They are always my first stop when I'm at my breaking point with advocating for him.
Jesse is just having a ball at the expense of mom's sanity 😂
🤣😂😅😁😉😄💕💕💕 LOVE IT!!
IIIShmeeIII haha so well said. It’s hard not to laugh as she is so cute! Maybe she was enjoying the extra mom time. :-)
Actually it is pretty common for autistic children to have sleep problems.
Some seem not to need the sleep the rest of us need. Which does not make it easy on parents or caregivers.
@@heidimisfeldt5685 I'm just on the autism spectrum..I can go days without sleep..I think it's when there's a lot of things happening around me at the same time..the more sensory things the more likely I'll not sleep
Jesse has a pretty singing voice
She really does!
That's what I was just thinking!
It's almost haunting but in a good way.
She no joke has a pretty singing voice! I love her
Faithyy I know I love her songs 🧡
Jesse is partying like an 18 year old right now 😹 she’s funny she said “go” like your interrupting her party over here !!! 😹 she stayed quiet waited for you to leave then turned it back up into party mode lol such a teenager 😹😹😹😹😹😹😹😹😹
Yup!! 😉😄😂🤣❤
😍😍😍😍😍😍😍🤣🤣🤣🤣🤣
Ahahaha the _...Go_ literally kills me
I love when Jesse says “ok ok!” Lol
That made me smile too! It's so cute!
omg same and when she no no, oh god she's so cute
💖✨
Kim Basciano - so adorable
I know it’s so cute!
she has eating disorder, sleep disorder, autism and blindness? that's a lot to bear for parents and the child, wish you all the best, keep your chin up!
Simply Sasuke that’s wild but I don’t remember asking. And of course other people deal with it
áine is okay rude as hell, people are allowed to share their experiences if they want
@@aineisokay7238 Stfu and go play in traffic or something.
@@aineisokay7238 I'm surprised someone like yourself watches this channel but you should really learn from Karen. I hope things get better for you sending love and light .
When she said "GO!" when her mother came in her room, as a 16 year old girl, I felt that 🙌
She is doing so great with her “I love you!” 👏👏👏
Thanks, Kirsten! I am so glad you caught that! 😉💖💖💖
SO TRUE 💯 PERCENT 🤗 WHAT A AWESOME MOM💞💝WITH NOTHING BUT PURE LOVE AND PATIENT'S THATS ALL NEEDED STRAIGHT FROM THE HEART💓 ...I LOVE SEEING😍JESSE SHE'S A NATURAL BORN STAR🤩💫🎶🎶🎶🥰SHE'S IN HER OWN WORLD🤗 👏 AND AWESOME DAD👏🤗💞...BLESS Y'ALL HEARTS💓💝💯PERCENT!!!!
@aimee glatt
How do you think kids learn...???
Watch any little toddler learning to talk. The autistic kids just tend to take longer, like they have a timing of their own.
This woman’s patience is amazing and I like how understanding the rest of the family is.
You are such an amazing mother. So much respect. You’re raising some beautiful children and they’re going to be some of the nicest people out there. 🥰
totally agree!
My son was stillborn last March, and I just recovered from my 3rd miscarriage. This one nearly killed me- figuratively and literally. My husband and I have always wanted to adopt, and now that I’m done trying to bear my own child, adoption is so heavy on my heart and mind it keeps me up at night. I’m scared of the process because of finances and getting hopes up for a specific child and not have it work out legally, but I am just so ready to be a mother. This channel and your family makes me so happy and keeps my hopes high. 💙
Brooke Hart start with foster care! It doesn’t take that long to get the training
Brooke, I had to sleep on your comment...My heart grieves for you. We are sorry for your losses. Reach out anytime you are ready to begin your adoption journey. It has been awhile for us, but we might be able to help steer you in the right direction and offer insight. The decision to start and the perceived unknowns are the hardest part, really. I bet you'll be a terrific mom!! ❤❤❤ sixblindkids@gmail.com
Brooke Hart To go through so much hardship and loss go be a mother and still not give up proves what a wonderful mother you’ll be. Whatever child you end up with, I know you’ll be an absolute blessing in their life.
God Bless you. I am so sorry. stay prayed up and positive.
So sorry about your loss. =(
Keep those hopes up, if these videos are any indication you're bound to have a full and happy family.
The door thing cracked me up 😂 she’s such a silly girl
Yessss tooo cute.
The "I... Love... You!" really warms my heart ❤
jesse is so pretty. i love LOVE her big hair
Im kinda jealous!
@@Brigglesbitchlous
You're the person she needs to be with. You're angelic and patient, just what Jesse needs. I'm so so happy to see her with you of all people in the world. Some people aren't understanding and loving, which is where abuse comes in. Jesse is also beautiful and will overcome her disorder, I have faith!
And your eyes are beautiful! I can see the exhaustion and I'm praying for your strength to keep enduring these rough patches. 😊❤
19:49-20:08 Love that moment. Really shows the unconditional love between y‘all. Jesse has one difficulty/disorder after another but you don’t see her any different from other people. Just a totally normal and loving family dynamic. That’s true love and support right there. Bless you all😍🥰😘❤️
I forgot to mention how patient you are. It is so inspiring. When my 3 year old daughter wakes up at 5am and I’m like a zombie with burning tired eyes, I do not have patience! Thanks for being so kind.
I started laughing when you said “say goodnight everyone... or good morning is the case”!! Lol!
Awww...thank you, Alexa! Jesse makes it easy. She is a sweetheart, but I gotta tell ya, it ain't easy...I think I am too tired to get upset! LOL! 😉😄😏💕
In a world where the cute puff ball doesn't sleep.
I've been bingewatching so many of your videos since I've discovered you guys through SBSK's channel... and you know what's ironic?
It's the middle of the night here and I should've been asleep hours ago. 😂
Looking forward to more videos! 😄
Haha same
Yeah I did that a few nights ago :)
Ekkaya I was at The hospital yesterday I woke up yesterday at 3.45am now it’s 6.32am uk time I still haven’t slept yesterday and today long live the party Jessie!
I’m here when I should be asleep too 😂
Me too!
Well. First of all (I'm referring to mommy dearest)...who looks that good at 0'dark thirty? Your a great mother to these kids.
My mother (my very Asian mother) and her 15 brothers and sisters are the same way as Jesse: goes to bed at 3am. 🙂
Awww...thanks...you are too sweet! 😊 16 kids?!! All up until 3am?!! I am exhausted just THINKING about that one!!! LOL! 😉😄❤❤❤
My mother is now 73yrs old. This was many years ago in the heart of Hong Kong 1940-50s. What’s more exhausting: their apartment was three bedrooms. One medium size eating area. One bathroom and, oddly. A plastic tub for bathing. According to my mom. None are disabled and they helped take care of each other.
I was exhausted visiting when I was young and seeing how they lived.
@@joycew3086 that's really interesting. Thank you for sharing.
So they didn’t sleep? Or slept in every morning?
please share the difficulties as well, you're doing a great job!
Thank you! 😊💕💕💕
Youric Hunt why be rude smh
Caramel Delight why be rude smh
@Caramel Delight You're actually the only one who interpreted their comment as meaning they only see difficulties. Looks like you're the one finding negative meaning in things that aren't inherently so.
I’m sure Jessi appreciates her patient and loving mama! ❤️
Talking about how u guys cope with different things isn't negative at all!
Oh, good! We think it is important to know these things. I suppose it is all in the way we do it...thank you. 😉😄❤
I love that smile she has when you first came in the room. Just like “Oh hi Mom, so glad you could come visit.😋”
Her hair is big and full of secrets!
And I will never tell what they are!! 😂🤣😉❤👍
I think it's great you show the hard times as well as the good. This is reality. God bless you great lady! You will surely have a lot of jewels in your crown! 😍
Maybe getting her a diffuser and putting in a couple of drops of lavender or eucalyptus oil may help? She could associate the smells with bedtime? That's what I use to help me go to bed and they do give me a calming effect. And if I really have trouble sleeping, I take a sublingual melatonin tablet.
Great idea! Thanks! She does take Melatonin.😉😊💕
I never thought of associating scent with sleep that way - that's so clever
Yes anything to establish beddddd
Routines
Read story, bath, pray, the jumpsuit, sing, smell diffuser
K I actually lol'd when Jesse closed the door on you. Middle of the night is clearly the time to play! 🤣🤣
5:08
I really love this part!! ❤️
Jesse is like “Oh!! Who’s there?! **Opens door** Oh my-! **Closes door** Is momma!! Aaaah~!”
My son has ADHD and we have to give him a little melatonin at night as well. I just adore watching your family. Karen and Joe, you both are such amazing, patient, caring parents! Love you guys!
Same our kids are supper light sensitive and in Alaska summer that's a big problem melatonin helps us make it thru the midnight sun
I love how patient this mother is. I desperately wish I could be as patient as she is. It is such an admirable characteristic to have: to be patient and understanding and relaxed in difficult situations. This is such a good way to be. ❤️
jesse's a singer too! i wonder if she learned from hannah! :O
Jessie has so much hair it looks so fluffy
My 7 year old brother did almost the same thing. He would come home from school and take a nap. Then, he would be up ntil 2 or 3. I actually didn't know that there was a disorder for that. I used to do the same thing. You guys taught me a lot. I am blind and watch your vlogs everyday.
Mama bear pellets!! Lol. Genius mom! Thanks for sharing with us Jessie' s nighttime/daytime life. 💕
Coffee is LIFE! 😁💕
Jesse is a smart cookie. She found a way to have a private moment with mom.
Sometimes we wonder.....that's okay. Mom enjoys it, too! Just don't tell Jesse! 😉😄❤❤❤
Im glad you're staying positive with all these struggles. its also really good that you are showing the reality of the struggles because that can help family and caregivers who experience similar struggles.
Seeing Jesse rolling in bed CRAKED ME UP. Impossible to get mad at her!
You are so right! She got up at 4am today. I stumble down to her room and all I can do is laugh! She is such a precious girl! She can't help it....😉😊❤❤❤
Jesse is so cute and innocent for some reason💗💗💗 it shows how much u love her!!!
she sounds like she has perfect pitch even with the words she says :)
We think so, too! 😉❤❤❤
Wow you're a saint!!! Not many people Could take care of them the way you do and remain so calm.
She picked her blanket up with her feet! Now that’s talent!
You should have your own reality show! ❤️
Isn't that what we are doing? LOL! 🤣😂😉💕💕💕
@@SixBlindKids yes, on YT but I meant on TLC.😎
Haha! Well...you just never know! 😉😄💕
After showing my mom your family, she also said you guys deserve a show on television. But I love this personalized version on UA-cam as well. Whatever the case, I hope you guys get as much success and awareness from this as possible. Because you're all great and lovely.
Yes I agree 100%
You guys are so polite, please never feel like telling us about your challenges is negative, I think I speak for a lot of us when I say we are here to learn about these exact things you have to overcome with the kids. If I was in your area and obviously if you knew me a lot better than being a stranger on the internet I would totally volunteer to help with this as I am pretty much a night owl.
I think it's a good thing to share all aspects of your life if you feel comfortable sharing them. It helps to understand everyone and gives real glimpses into all it takes to raise a family with disabilities. I do have to say you are a patient and strong woman! I would have been dying at 3:00 am. :) I've been there and it's not fun for one night let alone weeks. Thanks for sharing more of Jesse too! She's a sweetie.
Thank you, Stacey! This is good to know..😉😊❤❤❤
Jesse is so beautiful! I'm glad you let her have her hair long so she can get that stimulation.
I sleep opposite I’m awake all night sleep in t day mainly because of my pain levels plus I seem to sleep when staff and others are awake as I feel more secure at night my tinnitus is louder and makes my mind think someone’s outside at night.
That's rough..we are so sorry to hear this. ❤❤❤
1) You and Joe are both incredible!!
2) The typical teenage answer to most questions, "No!" - Jesse (She and Obed have witty responses at all times of the day!)
... and "Go!" ... I want to take her to work one day, she can answer to management for me ;)
Anna USF 😂😂❤️
I'm not a super religious person by any means, but I'd like to think that I have a decent amount of faith. Having had these joyful glimpses of your selfless, authentic soul is one out of a handful of earthly wonders that helps rejuvenate and keep said faith alive. You're beneficent, and that kind of genuinity is a welcomed reminder that humanity is alive and well. How easily and quickly we lose touch with our benevolence towards one another when somber times roll in and sets up shop for a longer stay than we'd like.
So many folks on here, including myself, are grateful for people like you, and those in your family, for all you do, each and every day. Thank you for continuing to share your world with us. Each of you are living proof that decency and virtue still exists in our world.
God really knew what he was doing when he made all of you. I truly believe that, and I surely couldn't be convinced otherwise. 😊💜
Jesse: (at 7:09)
_is singing angelically_
//7 seconds later//
*SLUUUURRPPPP*
(I'm just joshing you guys, Jesse is so frickin adorable)
Yep! All day long! 😉😄❤
I was wondering if having her sit outside in the sun or at least the day light may help reset her clock. I know she cannot see the light but maybe the UV on her skin may help her body get its day night bearings.
Thank you, Glen! You guys come up with the best suggestions!!! Not a bad idea....😉😊❤❤❤
Definetly worked for my niece
Yes, good idea. The body is affected by changes in sunlight, independent of whether the person can see it or not. They've even discovered that if artificial light is on when women are asleep it can affect their hormones & cause weight gain, which is proof that the body is affected by such things whether we are sighted/blind or awake/asleep.
And if she doesn’t feel like sitting outside they sell bedside lights (about the size of a 1980s alarm clock. You know, the dark brown fake wood ones with black buttons on the top and red display numbers :)
Aaaaanyway, it delivers a safe UV light exposure without the damaging UV rays from the sun....Don’t have to mess with sunscreen or going outside with the 5 kids (which I’m sure even gathering them up to sit outside is like herding kittens).
Studies show the bedside UV light still helps with the circadian rhythms/the brain still processes it as sunlight.
Just another option :)
It might not work for her, while I do not have her issues, I do have the WORST sleep cycles, it’s horrendous. An example is that I got yelled at when I was a kid in elementary school because I was yawning so much because I was so tired, and I wasn’t even aware I was doing it! I also found out the truth about the truth fairy at a very tender age because it was 2am and I couldn’t sleep! Here are some ideas that I have gleaned as I am 52 now, however, obviously these are just ideas, not commands! Vitamin D levels, mine were very, very low. I take it at night because it makes me too sleepy during the day, however, obviously check with you doctor, it’s a calcium/D mix as calcium is needed to absorb the vitamin D. Magnesium, in careful dosage, because too much can be like a laxative, but it absolutely has helped with relaxing when taken with vit. D. Now, this next one has helped me a great deal, but I don’t know how realistic it could be for Jessi. Over the years, as I have learned about circadian rhythms, I decided that I would try to divide my days, more or less, into 12 hour intervals, no matter if it’s day or night because my sleep was just so out of wack that sometimes I would sleep for 24 hours straight and feel totally unrested and I felt as though I had slept for only 8 hours, if that makes any sense. So, what I try to do, like say right now, I woke up at 7pm, so I will try to stay up for the next 12 hours, give or take, because if I try to go to sleep at a regular time, like 9 pm, it will be a fool’s errand, so I stay up. I try to stay up past 3am, at least, that’s my mark for beginning to wind down when I am up at night. When I am up at night, I try to do maybe quieter activities, but if I am kind of active, I do it near the time I woke up, so that my body can calm down. At around 3 am, which my “bedtime” would be about 7am, I start to wind down, because no matter what, it takes me about 3 hours to fall asleep, so that’s part of the 12 hour interval. I know that this is a lot, but I hope that this is ok!
How I wind down to go to sleep, I do a little puttering to get ready for the next day, I’m speaking for myself since this is the first video that I’m seeing about her and the sleep issues. I take a bath with a couple drops of lavender, and BTW, lavender is wonderful, but a little goes a long, long way! This is one oil that has had some clinical proof that it is effective for relaxation. I also use Epsom salts, which is basically magnesium flakes, which also help with aches and pains, but it’s very relaxing. You have to use a lot for the best benefits. Also, warm up her towels or robe in the dryer so when she comes out, she won’t feel cold. Even maybe a small space heater.
When I go to bed, over the years, I have realized that I often can feel very hot at night plus, menopause! But these things would have helped me without going through menopause. I have to feel cool, maybe Jessi might feel hot and not be able to explain it? I use a fan right by my bed, I have a gel cooling eggshell mattress topper, I use Sheex cooling sheets as well as a cooling comforter with cooling pillows. Since I sleep a lot, I also sweat and the sheets can feel kind of moist, which I hate, so I pop the bedding into the dryer to get rid of it. I also use a lot of plush, I have a plush robe, plush slippers, plush blankets, it’s very, very soothing to the touch and if I was a betting person, I would bet that she would love the tactile softness! If I feel a bit cold at night, I keep a plush throw in my sheets so I can just pull it over me. I stay in bed, but upright, for about two to three hours, I’m on social media, and then, for me, and again, this might not be for Jessi, I take a benedryl just to help me get sleepy, it’s not for me to sleep, just to get sleepy, when I feel it kick in, I lay down.
How I try to relax for sleep while laying down. I make up stories, and I have to tell you, that the moment I focus on some silly story of which I’m the star, and learning over the years to not think about what I did or didn’t do, but make up ideas of what I hope to accomplish, my own fashion empire, a dog shelter in Costa Rica, there’s a moment when I feel my mind is off of the stress of trying to fall asleep and I can feel myself beginning to relax. What can Jessi look forward to tomorrow, what are her hopes and dreams, the Bible says to focus on what is good, let that be a way for her to be motivated for the next day.
This took me years of practice, and I’m still not perfect at it! But it has helped me so much.
This woman is a saint !!! I would never have the patience like she has ... it’s actually refreshing to watch how calm she is
I believe that we are mature enough to listen to your struggles without feeling that they are complaints. In fact, you may never realize what a blessing it could be to someone else if u did share them once in a while. We know they are not burdens just difficulties. Everyone's life has struggles and trials. 💜💜💜
Thank you Stormy! You are so right! As a mom, I appreciate hearing the real deal from other families for that same reason! We learn so much and realize that we are no different from others who go through the same thing. I think sharing these things help bond us together as a community! 😉😊❤❤❤
this girl is blessed with extraordinary musical talent..
Is always a trouble maker in each family. Jesse girl, I love you !!!
I love how she turns over and says “ok ok” trying to end the conversation and get you to leave.🤣🤣🤣🤣
You are so patient! I feel like I would have raised my voice or gotten irritated at many points! (I know it's not her fault) Seriously mother of the year!!
Does Jesse ever tried a weighted blanket? I heard that they are really good for people who are on the spectrum for autism. Tell Jesse I also sleep in my denim jacket 🤣🤣. Jesse is absolutely adorable and her bedroom is beautiful. She has my dream room!
I’m not autistic but I have a weighted blanket and it’s awesome
I am autistic and my weighted blanket is sooo soothing. I can barely sleep without it, now.
I have SEVERE generalized anxiety disorder and panic attacks and I have a heavy feather blanket that looks like what Jesse has and it’s weighted enough to help me sleep. Some nights are worse than others and usually I sleep all day and am up all night. I usually go to bed around 10 am and sleep until 5 or 6pm
@@9622paige OMG I do the same w/ the day/night flop, although mine is less severe (4/5 am and get up at 1/2 pm unless i have to go to something and then im so sleep deprived). I just had a sleep test that's screening me for narcolepsy, delayed sleep phase, non-24, and sleep apnea. I'd look into one too, especially delayed sleep phase and non-24! (I have anxiety, PTSD, autism, and depression so i relate)
@@seagullokapi did you do a test? Having that many mental illness is impossible for me
You can't help but smile and love it when she's so happy and smiling tho ❤️❤️
This has to be exhausting to go through, especially knowing you have a busy day ahead. You are wonderful parents and have a wonderful family. 😁
15:38 "Momma Bear pellets" I HEARD THAT GIRL!! 😂😴😴💕
Beautiful Jesse is so full of Life from the Love that surrounds her on a daily basis which is the Love that is Lovingly called, Family. 💖🏡🙏😇
Jesse is so beautiful! Inside and out. Such a character as well, acting just like a teenager hehe. "one two three go!" And I loveee that she can say Love You. Gosh, being a mother is hard enough, but this mother's life is full of challenges but she accepts them with open arms and gets on with it, like the superwoman she is. I'd love her to be my mum for a bit!! Haha. Lotsalove xx
Jessie hair is beautiful wow
I find you all so wholesome. Even though Jesse can keep everybody up when she flipflops I can just see how you all love her. Especially the girls😊
My heart literally melted when jesse said I love u i swear this is the first video ive seen of hher ever saying a word i love it ....
Mom even when your tired you are absolutely beautiful! Keep up the good work and stay strong !!! And Jesse girl take it easy on momma she needs to sleep to girlfriend !!! Have you tried instead of letting her nap keeping her up at till bedtime ? With loud noises and annoying things so she can’t sleep until bedtime ?
Also I know you guys are super positive people but I like seeing the down side to it shows how strong you are and that you Never Surrender !!! Love ya fam
you asked Jessie if she was a blessing to you, & I know she is...i think that you & your husband are just as much so a blessing to her & all of your kids! ya'll are an amazing family...& I would have given anything to have grown up in such an accepting/non-judgemental family.
y'all are a beautiful family in so many ways!
Omg, Mallory...ya made me tear up. Thank you for such kind words...😊❤❤❤
You’re a great momma. My daughter is blind/hearing impaired and does this on and off all week but screams, cries, grumps so we are in the thick of it currently. Then our 2 other special kids get up and want to join in. If she would be happy I’d be happy but she gets so upset. Your videos give me lots of hope for the future. Thanks for sharing. It’s a true blessing.
Omg..Jen, my heart goes out to you. Have you talked to the doctor about it? I wouldn't be surprised if she has the same sleep disorder. Melatonin really helps Jesse, but there is a trick to it- 7pm every single night even when she is in a good cycle- and your doctor prescribes the dosage even though it is OTC. I would lose my mind if Jesse was that stressed by it and it started affecting the other kids. In our case, she wakes up happy and that really helps us deal better with it...I hope this helps. God bless you!! ❤❤❤
You are an angel! Even when it’s exhausting and stressful you are so calm, loving, and nurturing. God bless you and your family!
I love your family so much! I have binge watched tooooo many episodes this morning, lol.
I look forward to hearing more about each one of them. Also, the love, grace, kindness, and understanding that you surround them with is amazing!! You have to be the most patient woman I’ve ever seen. It is inspiring to say the least!
I love that you are serious when you say things like “you need to be quiet” and “it’s time for bed now...”
but you always follow up your correction to their behavior with such kindness and love and reassurance.
You set an excellent example that frustrating situations do not have to end in being short with your kids or pushing your frustration on to them and making them feel bad when the situation is out of their control. (Like Jesse’s circadian rhythm flip).
Thank you for showing the world what true grace under pressure looks like.
You’re an amazing woman with an amazing family.
In those moments when you are thinking “how in the world will I make it through this??!” or “I just want one thing to not be such a challenge!” just remember that you are an awe inspiring person with such a big heart and your videos are a blessing and positive message to so so many people.
Never doubt or question that you are a phenomenal mom, wife, friend, role model, (the list goes on).
You have done nothing but fill their lives with immense love, security, safety, life lessons on being a good person, humor (again the list goes on :)
Thank you for sharing your family with us.
I appreciate your transparency. Folks need to hear this so they don't feel alone. God bless you❤
Thank you, Heather! I am hearing from lots of moms on this issue..we all need to support each other. We went through this alone for so many years. Sometimes it is just nice to know it's a "thing". Thank you for your kind words! 😊❤❤❤
@@SixBlindKids you're so welcome ❤❤
loved jessies lil GO ! when you first came in her room. So cute ! and Bethany is always just so sweet !!
Oh my Gosh!!It is not easy for you dear!!
They are lucky to have you as their mum.
You are a Blessing
You are a saint. It takes a lot of work to do what you do. People should never judge you because they've never walked in your shoes. God bless you for many, many more years.😘
You really are so patient... I'm not good with child in general, so I'll definetely lose my patience if I have to deal with the same problem you faced now. You're truly an inspiration❤️. I hope I can be a good mama like you when I get to have my own child in the future.
Her laughter is infectious her singing is beautiful and she’s beautiful when she says no no it is so cute miss Jessie you are such a beautiful girl. Mom your such a beautiful strong person who has a heart of gold all six kids are amazing sending you love from Northern Ireland ❤️❤️
You are such a wonderful woman and give me so much hope for the world.... wow. To hear you look at your daughter awake for nights in a row and tell her what a blessing she is to you... that was so beautiful.
Jessie is such a sweetheart 💕💕💓
I’m totally blind, autistic and have complex PTSD. I’ve had times where I’ve been able to go to bed at night, but I often wake up throughout the night. I believe it’s a mixture of the blindness, autism and CPTSD. I’ve found so many ways to deal with the distraction of sleep due to CPTSD, but it does still happen from time to time. I find listening to calming music throughout the night and my weighted blanket really help. I don’t use medication, because I’d rather go the natural route.
This is a beautifully authentic video. It is totally ok and helpful to honestly show that things are not always just fun and easy. I'm impressed! Thank you
Thank you for your kind and encouraging words. It means a lot to us! 😊❤❤❤
I love how much u take care of ur children. It warms my heart how much motivation and love you give to take care of them💗💗
Jesse is so smart. I love when she hums that little tune
I just love you so much! You're reward in Heaven will be amazing! I adore you so much ❤️ you are such a blessing to those beautiful kiddos! All parents need a lesson from you. Children are a gift, a blessing, and should be treated as such. You are absolutely amazing ❤️
i love how jesse stims so much with her hair, i do it too!
When Jessie’s is opening the door and shutting it. I feel like she’s playin with you 🤩 she wants you to stay up with her
jesse’s voice is angelic !!!
Everyone in this family has such a beautiful soul! ❤️ I feel so blessed getting to watch your videos and get to see the aspects of your lives that you’re willing to share! ❤️
We appreciate you being here, Hannah! Thank you! 😄❤❤❤
I think trying to paint a picture of only positivity sells a bad book. It isn’t real life. I think it’s important for you to show (to your comfort level) real life.
I am significantly low vision with a few other conditions. It’s still a good life, but not all rainbows and unicorns. I have non 24 hour as well. Insurance won’t cover the med because I have some vision. I take Clonazepam nightly for spasticity and it has the added benefit of sleep.
I agree
You are an Angel! Looking after your beautiful children i wish i can have even half of the qualities that you possess as a mother! ❤
What a gorgeous bedroom miss Jesse has!
I admire your honesty💝 Her O Suzanna was the sweetest...sending you peaceful,sleepful nights💝
She’s a rockstar👩🎤🥰💋
I had severe insomnia for many years, which in turn, caused my body to flip flop. Even though it's finally gone & I now can sleep at night, I still use melatonin & 2 essential oils topically in order to relax & to fall asleep at a decent hour. Something else that I have learned thats super important, is to keep a solid bedtime routine. This prepares my brain & therefore my body, to sleep.
I thought I would pass this info along to you- ya never know what might help.😊
And yes.... I appreciate seeing the real you - it's very educational & can help us to better understand others.😊😊
Love watching you guys!!
Thank you very much for your wisdom and your kind words! Sometimes I feel like just letting it all out there...we should probably ease into it lest our viewers become overwhelmed! LOL! To be completely honest, the kids aren't that hard (at least for me), but we deal with a lot of external BS that tries to trip us up all the time. Like anyone else, really- maybe just more of it...😉😄😊❤❤❤
Honestly, I enjoy the real content! I appreciate you allowing us into your lives the way you have. Just a thought, have you thought of using a white noise machine for either Jesse or the siblings trying to sleep? I can't sleep without mine, lol. Best of luck and I hope you get some solid sleep soon!
Thank you for this! We have been afraid to go there, but we are becoming more brave- you guys are so encouraging! I actually HAVE thought of mounting something to play white noise on her wall. We need to re-do her entire room to accommodate her sensory issues! 😊💕
So I'm really trying not to overwhelm you guys with comments while I binge watch your super awesome videos, especially those that aren't really new, but I feel for you so much with this, and for Jessie as well. I have non-twenty-four-hour sleep-wake disorder, have had it since I was an infant, and it basically does the same thing. It is so frustrating, can be very isolating, and is so very common for people who are totally blind. It's honestly amazing that only one out of your six has this issue. Out of all the totally blind people I've ever known, and that's a lot, I only know one who doesn't have it. Mine has always been toward the severe end; I just learned very young not to disrupt others' sleep, but I could never keep it from being a disruption in my and my loved ones' lives. For me it contributed to big problems with anxiety from the time I was a toddler, to difficulties in school and actually leaving college after three semesters, and to other health issues as well. I'm almost twenty-nine now, and only in the past couple of years have I been able to achieve any type of normalcy with sleep patterns, thanks to the right balance of meds after some trial and error. It's still pretty bad in winter, but I'm returning to school at the beginning of next year to finish my degree because I finally feel comfident enough that the meds and lifestyle changes are working well enough that I can be successful this time. It's been a really long road. I'm brand new here and you hardly even know me, but watching this, I just wished I could give you both a big hug. The struggle is real! Even more so with a child who doesn't know not to wake other people up. But as hard as I know that is on you, it warmed my heart to know that Jessie didn't have to be all alone all that time when her body was telling her it was time to be awake and doing things. For me, that loneliness was the worst part of things from the time I was very little, but my parents and doctors just didn't know enough about what was going on with me. I don't want to be one of those random internet people offering unsolicited advice that you probably really don't need, I just hope that hearing from someone who can verbalize it what a difference just having someone to be with during those long wakeful hours can make will be an encouragement to you both the next time this happens and you're feeling like zombies. 😣🥰
Nicole, I love reading your comments! This one is especially helpful!! Thank you for this insight..Jesse can't tell me this with her words, so thank you for loaning her yours!! Sending hugs back, friend! ❤❤❤❤❤❤
I watch your guys channel all the time I am so obsessed! I want to say it was really nice to show what you guys really go through on a day-to-day basis with Jessie. It is nice to see what the true reality is. I love you guys!
That’s why I like your vlogs because you don’t sugar coat it and people see your challenges and hurdles you face. Not everyone’s life is perfect but other people make it look that way.
Love your family and can’t wait to continue to watch not only the highs but the lows. Be real. We love you!
Thank you! I have the desire to be real and tell it like it is more than we have been...we might need to ease in- LOL! We do want to maintain dignity, but I think we can. I so wish we had started this channel 10 years ago! You guys are the most awesome and supportive and encouraging humans we have ever met! We appreciate you all very much! 😊❤❤❤
Your children are amazing! I am so very happy to have found your channel! But GIRL! I can’t function with any less than 8 hours, I don’t know how you do it. My hat goes off to you! Super mom for the win!!! ❤️ you’re amazing