Living with a Mysterious Syndrome (Caused by Environmental Factors)

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  • เผยแพร่เมื่อ 2 ก.พ. 2025

ความคิดเห็น • 3.5K

  • @SpecialBooksbySpecialKids
    @SpecialBooksbySpecialKids  3 หลายเดือนก่อน +3019

    I wanted to share that after this interview Jonathan and I played "the clapping game" which his mom discussed in this video. Being a one man crew, it can sometimes be difficult to film some of my interactions with the interviewee if they prefer to be more mobile. Rather than being super focused on capturing our interaction on camera in these instances, I simply enjoy the moment off-camera. I just wanted to share this because I'm a big believer that everybody is worthy of connection, even if you don't always see it in every video :).

    • @courtney9212
      @courtney9212 3 หลายเดือนก่อน +78

      I'm sure he enjoyed playing with you and that's what matters! 💕

    • @abdullahak2204
      @abdullahak2204 3 หลายเดือนก่อน +47

      I'm sure he had fun playing the clapping game with you !!!

    • @seventhtenth
      @seventhtenth 3 หลายเดือนก่อน +27

      thanks man

    • @danielle5873
      @danielle5873 3 หลายเดือนก่อน +14

      Hi Chris love your videos I can be your videos please to meet with you ❤️❤️😘😘😎😎😎😘😘❤️❤️❤️❤️❤️

    • @AngelJuliet
      @AngelJuliet 3 หลายเดือนก่อน +29

      You have such a loving soul I am sure you would never leave someone out

  • @zaza-pn5pn
    @zaza-pn5pn 3 หลายเดือนก่อน +2558

    You can really see how tired they all are in their eyes, they need more support.

    • @nancymosby7369
      @nancymosby7369 3 หลายเดือนก่อน +36

      agreed

    • @DougieFootball
      @DougieFootball 3 หลายเดือนก่อน +106

      ****Writing under my husband's acct ***
      Yes, you can see it. Even caring for a neuro divergent child all day, every day is exhausting. I'm sure that the father is being extremely honest with everything he is saying, but he is so exhausted in the beginning of this, trying to talk to the camera while handling his son, it makes you think, " Is he trying to convince himself or us.?"
      I worked with the Kessler Institute branch that manufactures custom orthotics, prosthetics, wheelchairs, beds, etc., so I got to see and interact with families dealing with very severe birth anomalies, heredity conditions, TBIs, that you very rarely see, so I have an understanding of the commitment it takes to raise them. It's probably the hardest job in the world.

    • @sunnydeessa714
      @sunnydeessa714 3 หลายเดือนก่อน +30

      Yeah poor family

    • @Lemons19902010
      @Lemons19902010 3 หลายเดือนก่อน +9

      ​@@DissapointedInYou what are you getting at?

    • @sunnydeessa714
      @sunnydeessa714 3 หลายเดือนก่อน +2

      @@DissapointedInYou can u explain pls

  • @loriehabel477
    @loriehabel477 3 หลายเดือนก่อน +4222

    Mom seems so tired 😢
    Dad is doing his best emotionally to hang in there.
    Seems like alot of love ❤️

    • @MarsLos10
      @MarsLos10 3 หลายเดือนก่อน +181

      yeah and all children have this vibe of being a bit on the side because of the heavy and special attention their brother needs :/ I wish it can be easier for them as they grow older

    • @BBSYDmom
      @BBSYDmom 3 หลายเดือนก่อน +84

      I was thinking the same, she does looks so tired bless her

    • @TiviDorta-ik9br
      @TiviDorta-ik9br 3 หลายเดือนก่อน +73

      I wonder: she is probably the one that spends most of the time with him. Hence, the tired demeanor.

    • @googleuser2480
      @googleuser2480 3 หลายเดือนก่อน +101

      I saw sadness

    • @rosimeiremoriggi9340
      @rosimeiremoriggi9340 3 หลายเดือนก่อน +8

      País fazendo.o.melhor por seus filhos. Deus os abençoe e fortaleça cada dia mais❤❤

  • @TS-yf2zf
    @TS-yf2zf 3 หลายเดือนก่อน +387

    "Everyone you meet is fighting a battle you know nothing about.
    Be kind always".
    Robin Williams

    • @Bryan-b1r2i
      @Bryan-b1r2i หลายเดือนก่อน +10

      The quote is misattributed to Robin Williams but it's a lovely one ❤️

    • @cazzi6927
      @cazzi6927 9 วันที่ผ่านมา

      It's very accurate. Just because u can't physically See someone is going thru something, doesn't mean theres nothing going on...no one has a perfect life, we all go thru something at some point, some more than others.

  • @KIskra
    @KIskra 3 หลายเดือนก่อน +2384

    So many comments about how difficult it is to watch this story... But this is life for some people. It's important to be understanding of others. When you see disabled people in public, don't get mad about being "disturbed" like the ladies on the beach for this family. These families want to be as normal as possible and deserve kindness, not people getting huffy because they left the house.
    Not every person's story is a happy, uplifting one and we shouldn't expect that either.

    • @SlaveofAllah-vl8dh
      @SlaveofAllah-vl8dh 3 หลายเดือนก่อน +25

      Yes 💯

    • @Kaecie-dl1dk
      @Kaecie-dl1dk 3 หลายเดือนก่อน +80

      "Not everyone's story is a happy, uplifting one, and we shouldn't expect that either"
      Idk why but that statement just hit me like a train, in a comforting way. I feel like that's a sentiment that could be very effectively applied in several different ways, both at the level of individual healthy self-acceptance as well as retraining oneself to actively reach towards empathetic understanding as your default method of interacting with the world. Really great statement.

    • @lulumoon6942
      @lulumoon6942 3 หลายเดือนก่อน +8

      Beautiful said, thank you! 🙏🕊️

    • @lisao7600
      @lisao7600 3 หลายเดือนก่อน +14

      I agree with you completely. Although I don't know if I would want to exist if that was my life like Johnathan.

    • @lblack1961
      @lblack1961 3 หลายเดือนก่อน +2

      💓💓

  • @mitchellking4988
    @mitchellking4988 3 หลายเดือนก่อน +1234

    I love the attitude of the father. I just want to give him a hug. He is displaying the best of what a man can be.

    • @Jose-Gonzalez-cfl
      @Jose-Gonzalez-cfl 3 หลายเดือนก่อน +23

      More like an angel, right?

    • @candicehochberg1607
      @candicehochberg1607 3 หลายเดือนก่อน

      Definitely an earth angel 🎉❤😊​@@Jose-Gonzalez-cfl

    • @amber062499
      @amber062499 3 หลายเดือนก่อน +16

      Amazing father ❤

    • @MrWhiteTank
      @MrWhiteTank 3 หลายเดือนก่อน +3

      I was just thinking this too! 👏🙏

    • @potatojones1089
      @potatojones1089 3 หลายเดือนก่อน +14

      An absolute warrior.

  • @fdbdbd787
    @fdbdbd787 2 หลายเดือนก่อน +413

    The eyes of the family members are so hollow and sad. This is the only video I have ever seen on this channel that made me feel gutted and wretched. Please, Lord, give this family a break. Some funded respite. Anything.

    • @yousefnassar2297
      @yousefnassar2297 หลายเดือนก่อน +24

      I could not agree more

    • @pampelmuse5403
      @pampelmuse5403 หลายเดือนก่อน +12

      I feel the same way about almost all videos on this channel

    • @thulitshabalala5848
      @thulitshabalala5848 หลายเดือนก่อน +23

      Your comment echoes my sentiments. Saddest case I've ever seen. The parents look as though they are barely hanging in there 😢

    • @laargento7233
      @laargento7233 28 วันที่ผ่านมา

      La india es un pais muy contaminado ambientalmente..es un pais donde hay muchas enfermedades. Y los niños nacen enfermos..la gente se baña en las aguas donde tiran a los muertos. Es agua contaminada.pobre familia.

    • @jenfentress7636
      @jenfentress7636 26 วันที่ผ่านมา +8

      I kept thinking: 18. I’m guessing He aged out of a lot of help.

  • @YarbroK
    @YarbroK 3 หลายเดือนก่อน +879

    There is no doubt they love him. This is a strong case that this family needs assistance, even if it is a couple hours or every couple of days. Everybody is burned out.

  • @fabuloussnake6011
    @fabuloussnake6011 3 หลายเดือนก่อน +2132

    I know this family in real life! They live closeby and my father occasionally invites them over to go swimming at our pool. Jonathan usually sits on the couch or on the edge of the pool with supervision. Such wonderful people!!

    • @dollsNcats
      @dollsNcats 3 หลายเดือนก่อน +32

      @@fabuloussnake6011 are they ok :) ? Like do you think here they may have been nervous ? How do they seem at home do they seem stressed or anxious:(

    • @Katherine_critters
      @Katherine_critters 3 หลายเดือนก่อน +84

      @@dollsNcatswhat? I find this inappropriate since this is the internet and if you want to ask this question in a comment section worded like this with ’ :) ‘ is just so disrespectful to me.

    • @dollsNcats
      @dollsNcats 3 หลายเดือนก่อน +91

      @@Katherine_critters well I didn’t mean that in a disrespectful way and you aren’t even the OP to be answering . I just asked from someone who personally knows them if they are ok 🤦🏽‍♀️ these people put their story out there for the world and everyone here is assuming everything about them .

    • @pure5000
      @pure5000 3 หลายเดือนก่อน +53

      @@Katherine_critters Take it easy… I wonder the same..

    • @levans3447
      @levans3447 3 หลายเดือนก่อน +16

      What a blessing your father is!

  • @Anita667788
    @Anita667788 3 หลายเดือนก่อน +188

    This is life with special needs. I appreciate that everybody expresses honest opinions, it might be hard to hear, but caring for someone 24/7 is very exhausting. I wish them the best with Jonathan.

  • @Laura_G
    @Laura_G 3 หลายเดือนก่อน +3743

    The concept that Jonathan's disabilites were most likely caused by environmental pollution is sobering. Too many political leaders around the world do not take the damaging effects of industrial waste seriously. There are valid reasons for environmental laws that regulate manufacturing and other processes. God bless this beautiful family.

    • @user-kh7tg8my4n
      @user-kh7tg8my4n 3 หลายเดือนก่อน +134

      It's not the political leaders fault, We vote them in, it's our fault

    • @gstrathmore194
      @gstrathmore194 3 หลายเดือนก่อน +13

      💯

    • @lovesallanimals9948
      @lovesallanimals9948 3 หลายเดือนก่อน

      ​@@user-kh7tg8my4n💙💙💙

    • @lovesallanimals9948
      @lovesallanimals9948 3 หลายเดือนก่อน +86

      You know what trump wants to do😢😢

    • @user-kh7tg8my4n
      @user-kh7tg8my4n 3 หลายเดือนก่อน +134

      ​@@lovesallanimals9948 Have zero wars?

  • @accenttunebyellie
    @accenttunebyellie 3 หลายเดือนก่อน +2356

    People saying this episode makes them uncomfortable. Yes, it is very uncomfortable, and it should make you feel that way. That's the state of their life. It's hard. I'm sure that for most of the previous interviews, there was a kind of unconscious pressure to put on a "smile" because the way they are being interviewed is similar - in a very happy and cheerful way. But not every family feels like that, and that's fine. For all we know, every single member of this family could in fact be miserable and that's completely legit and valid as well.

    • @Ambi1021
      @Ambi1021 3 หลายเดือนก่อน +53

      I totally agree.

    • @cesia9954
      @cesia9954 3 หลายเดือนก่อน +132

      Oh, what a relief to find your comment. Thank you!!! I agree with your words. That's why I loved the moment when the video starts, with the most honest words I've heard from a father. Accepting that the journey hasn't been easy but he's understood that it's been for the best. I don't think many will be able to resonate with that. I totally understand him when he says something like: "I know I'm definitely a better person than I would have been if Jonathan hadn't come into our lives...I've learned a lot about perseverance and hope. I've learned to be more flexible and less judgmental." "Having Jonathan has taught me to be more understanding and give people a lot more grace." How sad to read some comments, really sad that many here, can't reciprocate that grace and understanding that they give. Well, they miss out on that. I am a caregiver for people with intellectual disabilities. One of them, whom I have taken care for over 7 years, is very loud too. But it's so satisfying to be able to accept him, love him and enjoy him the way he is. I feel honored to be close to the family that loves him and I wouldn't trade it for anything in the world. I would love to meet Jonathan in person and play with him, it would be so much fun and an honor to meet his family too.

    • @bekahanneful
      @bekahanneful 3 หลายเดือนก่อน +19

      ⁠@@cesia9954​​⁠ what a gift to find your comment, too

    • @blu.dru_
      @blu.dru_ 3 หลายเดือนก่อน +77

      Love this comment because the point of this channel is to showcase the realities of kids with disabilities. It's not always pretty, in fact, most of the time, it's not.

    • @erica5513
      @erica5513 3 หลายเดือนก่อน +93

      I do not have a child with disabilities, so take this with a grain of salt, but I think parents may feel pressured to fall into toxic positivity. I hope there can be a discussion that having a high needs child is hard, depressing, not what you wanted for your life or theirs, AND you still love the child with every ounce of your being, value them, and would do anything for them. Both of those can exist at the same time, but it seems like in these videos the majority of parents only focus on positives and the siblings are more transparent about the issues

  • @YungNic
    @YungNic 2 หลายเดือนก่อน +157

    This always breaks my heart, bcuz you can tell they need a break... And they dont wanna feel as if they're bad parents by sending him somewhere... But you can def tell that whole family is tired 🙏

    • @summerr455
      @summerr455 2 หลายเดือนก่อน +16

      You can see it in the father's eyes. He looks tired and worried. God bless this family and please give the strength they need to care and protect each other. ❤

    • @jplisboa
      @jplisboa 29 วันที่ผ่านมา +5

      If they really didn’t want to be bad parents they shouldn’t have had more kids after Johnathan. They didn’t choose to have a special needs child but they did choose to put his other kids through all of this.

    • @jb8935
      @jb8935 12 วันที่ผ่านมา

      @@jplisboa and you find that makes them bad parents? Would it make someone a bad parent if they had a first child, who became very succesful, and then much later in life a second child, who never reached the same success as the first?

  • @melissapoole8580
    @melissapoole8580 3 หลายเดือนก่อน +1293

    I wish I could meet this family. My son is severely autistic, and some days I just want to cry. I am a hermit at home and don't go anywhere. I would love to meet this family and be their friend. 100%

    • @phoenixdavida8987
      @phoenixdavida8987 3 หลายเดือนก่อน +77

      Im sorry. It can be rough. Love to you and your son.

    • @BertTheBulldog
      @BertTheBulldog 3 หลายเดือนก่อน +45

      You are strong, Miss Melissa! Keep going

    • @Suziesweetworld
      @Suziesweetworld 3 หลายเดือนก่อน +68

      I’m so sorry. Please don’t be ashamed to reach out for help. You deserve a life outside of being a caregiver and I hope you have the resources to get some time to yourself

    • @ascs4944
      @ascs4944 3 หลายเดือนก่อน +27

      Me too. This reminded me of my son.

    • @WITHETSTORMXX
      @WITHETSTORMXX 3 หลายเดือนก่อน +15

      I am sending love to you. I hope you get the help that you need. Take it one day at a time or just one breath at a time like I have had to do. I knew I could make it to the next breath and soon that struggle had passed.❤

  • @lbdtech3480
    @lbdtech3480 3 หลายเดือนก่อน +51

    My wife is a nurse and she took care of people such as Johathon for about 10 years at a group home. Basically the parents grow older and pass or not able to take care of them and have to place them in a group home. The home was very nice with professional staffing. It was totally funded by the state and donors. It was zero cost to the family.

    • @samantha4130
      @samantha4130 3 หลายเดือนก่อน +9

      I did this too for approx 3 years. The parents don’t pay either, all funded. Very fulfilling work but long exhausting 12 hour shifts.

  • @laurarose7770
    @laurarose7770 3 หลายเดือนก่อน +1935

    This family has to be so burnt out despite what they say. The siblings seem like they have had to step up and take care of their brother despite not wanting to - hence using the words "passing the baton." I wish the family could have time to themselves so they could come home feeling refreshed and relaxed. It is okay to need help. This family deserves a break

    • @cassandrafearn3820
      @cassandrafearn3820 3 หลายเดือนก่อน +110

      Yes they need a break.

    • @Blitches-SLXM
      @Blitches-SLXM 3 หลายเดือนก่อน +152

      u can see in the parents eyes they are stretched THIN and burnt out smh

    • @8vI
      @8vI 3 หลายเดือนก่อน +105

      Unfortunately, sometimes there are no breaks.

    • @Alexandra-ng1ih
      @Alexandra-ng1ih 3 หลายเดือนก่อน +1

      this is why natural selection exists.. this isn’t right

    • @lacymcknight5043
      @lacymcknight5043 3 หลายเดือนก่อน +74

      I don't know if they have insurance or any of that, but sometimes it will pay for respite care to give families a break. I'm sure this is something they would've already used if it was available. Families like this desperately need occasional respite and a chance to just relax for a little while. The siblings in these stories are often amazing kids who really love their sibling, but it has to be hard to have Jonathan's needs come before theirs. This episode just made me really sad for all of them.

  • @JourneytoGao
    @JourneytoGao 3 หลายเดือนก่อน +799

    We rarely see special kids on this channel who are so big and muscular that it takes physical as well as emotional and psychological strength to deal with them. The father is out of breath from effort. My heart goes out to these people.

    • @jonhetherington2654
      @jonhetherington2654 หลายเดือนก่อน +23

      i run a disabilty support company, and this is the biggest overlooked issue. the guys become fu;ll blown adults and can be just as exceptional. we have a 33 year old female client who runs faster than anyone i have ever seen, male female of any ages. noone could possibly keep up.

  • @danielleedmonds3832
    @danielleedmonds3832 3 หลายเดือนก่อน +40

    I appreciate his brother being honest and sharing his own hurt. You are loved young man, and I hope you truly know it. Your parents love you deeply I’m sure!

  • @butterflygirl3359
    @butterflygirl3359 3 หลายเดือนก่อน +859

    I notice that the parents of so many of the children featured on SBSK seem like the nicest people-much better than most. Jonathan’s siblings are amazing. It’s so refreshing to hear their honesty, this cannot be easy on them.

    • @Short_one41
      @Short_one41 3 หลายเดือนก่อน +16

      Exactly 👍🏻

    • @JayJay32186
      @JayJay32186 3 หลายเดือนก่อน +61

      It’s because any sort of judgmental or mean aspects in our personalities get erased by having a special needs child. I was always a good but impatient, sort of ungrateful person before I had my child with special needs. My child has changed my heart and world. I am so grateful for everything my child accomplishes. What some parents take for granted as a basic, expected skill is celebrated a milestone for us. I am now incredibly patient because that’s what my child needs me to be. Special needs parents are some of the happiest parents out there because we’ve learned to celebrate every success, no matter how small. I am probably the happiest, proudest parent I know. I don’t sweat the small stuff. Things that other parents complain about almost never apply to me. We have our different struggles of course but overall I feel extremely blessed.

    • @Short_one41
      @Short_one41 3 หลายเดือนก่อน

      @@JayJay32186 good job 👏🏻👏🏻👏🏻👏🏻👍🏻👍🏻👍🏻🤗

    • @tangogent
      @tangogent 3 หลายเดือนก่อน +8

      @@jacobus57 No one is saying it is. Are you doubting their love for their blighted child/sibling? I don't. Love isn't always an easy thing.

    • @guardianangel9517
      @guardianangel9517 3 หลายเดือนก่อน

      ​@@JayJay32186
      This is the first comment that I actually really enjoyed.
      You've got the right stuff
      💪🏻🫂🌞🙏🏼

  • @NoircatMask
    @NoircatMask 3 หลายเดือนก่อน +875

    I think this is about the first time I've seen a person who acts exactly like my brother, and isn't my brother. Lots of love. Thank you for staying together as parents, mine didn't.

    • @phoenixdavida8987
      @phoenixdavida8987 3 หลายเดือนก่อน +70

      It must be a challenge. Much love to you and yours.

    • @TeagueChrystie
      @TeagueChrystie 3 หลายเดือนก่อน +18

    • @Shopgirl1
      @Shopgirl1 3 หลายเดือนก่อน +78

      I cannot imagine dealing with this day in and day out and the other kids feel left out and out of fear will probably not want children of their own…and the parents will expect the other kid to take care of the disabled brother when they gone..a burden I wouldn’t wish on anyone as I had a very low functioning Down syndrome brother my parents expected me to care for and my wife of 40 years could not deal with it and divorced me..I wish I would’ve made the decision to place my brother in a personal care home so I could’ve kept my marriage but it was beat into me from the time I remember that my brother would be my responsibility and I went with my parents wishes instead of considering my wife

    • @BelindaM44
      @BelindaM44 3 หลายเดือนก่อน +3

      ❤️❤️❤️

    • @sheablancotricia
      @sheablancotricia 3 หลายเดือนก่อน

      @@Shopgirl1 As the Dad says, give yourself grace, Shopgirl1. You did the best you could with the information and resources you had...

  • @wavy.m3
    @wavy.m3 หลายเดือนก่อน +103

    that mom is so over it. props to the dad for sticking it out, although i can tell he's not that happy either.. poor family...

    • @yousefnassar2297
      @yousefnassar2297 หลายเดือนก่อน +21

      they really don't look happy..

    • @khorneflakes3434
      @khorneflakes3434 หลายเดือนก่อน +8

      My impression too, mom can't afford to invest more of herself in this situation, not sure if she has much of herself left. Dad seems to go at it with raw nerves at that point, impressed by his composure thought.

    • @Andreeamalak8431
      @Andreeamalak8431 24 วันที่ผ่านมา +5

      The mom is probably just shy in front of camera, she understands her son's needs immediately, she even started pet his back when he started screaming

    • @farmgal77
      @farmgal77 20 วันที่ผ่านมา +1

      One of them is going to snap one day 😔

  • @nataliekirhen42
    @nataliekirhen42 3 หลายเดือนก่อน +420

    I'm impressed that Chris created a space where the siblings were comfortable being honest with him. They are all really lovely kids and so are their parents. This family is dealing with a lot and I admire their perseverance and love for Jonathan.

    • @tangogent
      @tangogent 3 หลายเดือนก่อน +25

      Hey, however amazing I believe Chris to be, it was the parents who created the space of acceptance, respect and love.

    • @nataliekirhen42
      @nataliekirhen42 3 หลายเดือนก่อน +13

      @@tangogent that is a lovely point and well taken- thank you!

  • @frog1204
    @frog1204 3 หลายเดือนก่อน +1086

    It’s easy to be all positivity from the other side of a video but this entire family’s lives revolve around 24/7/365 patience and care for one human. I cannot imagine the strength that takes on a daily basis, even though it comes from an abundance of love. Even caring for a sick or disabled pet is so exhausting, let alone a child. I hope each of them is still able to live a little bit of life for themselves and get a break every once in a while. They are amazing people 🙏

    • @adriannamatos865
      @adriannamatos865 3 หลายเดือนก่อน +107

      This is why I never want children. If I ended up with a kid like this I wouldn’t be able to handle it. I can barely care for myself on bad days. Poor parents look exhausted.

    • @9sheri9
      @9sheri9 3 หลายเดือนก่อน

      ​@@adriannamatos865soooo much truth in this, I totally identify with you for real 💕🫶

    • @mollz3704
      @mollz3704 3 หลายเดือนก่อน +104

      I wouldn't want a child like this. Flat out. People will judge but I think it's important to be honest with oneself.

    • @AnnikaK87
      @AnnikaK87 3 หลายเดือนก่อน +55

      @@mollz3704I wouldn’t either. I have to turn down the sound for this video. Which you can’t do in real life.

    • @SassyXR6007
      @SassyXR6007 3 หลายเดือนก่อน +31

      I agree. I have a special needs daughter, she's 8 and sometimes i get impatient and feel awful 😭 These people especially the dad are amazing.

  • @Jake-pz7oi
    @Jake-pz7oi หลายเดือนก่อน +150

    I get its unconditional Love and they will do anything for their son, but when it comes at the cost of the well-being of the entire family, especially the parents, then I feel something needs to be done. Johnathan should be in a place where he has 24/7 caretakers and the family can still come by and visit him whenever they like. I would gladly donate to a gofundme to make that happen. The family need to live a healthy life also, they are worn so thin.. I’ve never been able to see it written on the faces like it is with the father and mother here.😢🙏

    • @Bicth97
      @Bicth97 28 วันที่ผ่านมา +19

      This is really hard to achieve and guarantee a person is actually happy and safe there, a temporary caretaker that comes to their house would probably be easier to find and trust. There is a lot in a relationship like this that's lost when you don't participate in their direct care at all.

    • @hobog12777
      @hobog12777 25 วันที่ผ่านมา +14

      I feel so horrible for Jonathan too because he responds with a "Yeah" so fast when Chris asks a question (like whether he's fully blind). Clearly he understands what's going on around him. I'm sure it would matter to him whether he's in a home or around his family. However commenters are right that the family appears defeated and I can tell why. I'm not in a situation to give advice but I wish them all the best including Jonathan.

    • @NoName-pu5ls
      @NoName-pu5ls 24 วันที่ผ่านมา +3

      ​@Loveandlightforallblah

    • @annettecuke7523
      @annettecuke7523 23 วันที่ผ่านมา +14

      @LoveandlightforallI admired that the family is taking care of Jonathan. But if they chose to institutionalize him, I wouldn’t say it is giving up. Everyone’s situation is different. Thanks for sharing.

    • @lilyfromafar969
      @lilyfromafar969 21 วันที่ผ่านมา +3

      Ummm no way . At my friends nursing home the nurses are so overwhelmed with patients that they literally drop off the food in the room and expect the patients to eat all by themselves. Some patients can’t get up to get the food . Some can’t hold a fork some are blind and have a hard time finding the food . My friend has to help some of these patients otherwise they won’t eat . Sure these places are great 👍🏻 . The parents love him , he is safe .

  • @bluestarr2009
    @bluestarr2009 3 หลายเดือนก่อน +882

    Imagine getting the police called on you and forced to leave the beach because other people didn't like how your son expressed how he liked it. My child is autistic and expresses happiness verbally in a way other people don't understand, too. You are doing a great job, Mom and Dad!

    • @azzaakos1284
      @azzaakos1284 3 หลายเดือนก่อน +63

      i know. the story made my sad, especially considering how the family didn't take another beach trip for over 10 years because of that

    • @Mtz2604
      @Mtz2604 3 หลายเดือนก่อน +29

      When I heard that it broke my heart.

    • @bienemaja2876
      @bienemaja2876 3 หลายเดือนก่อน +62

      The policemen who came to the beach could have done a better job: tell the ladies to mind their own business!

    • @katlyndobransky2419
      @katlyndobransky2419 3 หลายเดือนก่อน +55

      It’s a sad reality, but people go to the beach to enjoy themselves as well. If someone is being a public disturbance it’s problematic. The entire situation still should’ve been handled better

    • @blairariavanderkamp3405
      @blairariavanderkamp3405 3 หลายเดือนก่อน +44

      Other people also deserve to enjoy their vacation. 🙄 It's not society's fault or problem that their child is severely disabled nor do they have to put it with his disruptive behaviour for hours. If his situation was preventable, I can't begin to imagine how horrible and guilty his parents feel 💔

  • @Butwhodid79338
    @Butwhodid79338 3 หลายเดือนก่อน +379

    I really appreciate you asking hard questions that often get buried like asking the brother about how he didn’t feel he got attention compared to Jonathan and the bigger sister who told us how she would like to be a separate human than just “ Jonathan’s keeper” .
    These are real struggles that most adults hide or judge others for speaking of. It’s important and humanizing to talk about them rather than pretend it doesn’t exist so others in similar situations don’t feel unneeded guilt by media that makes living with disabilities prettier than it really is, regardless of how you feel about it.

    • @tangogent
      @tangogent 3 หลายเดือนก่อน +7

      Clearly, the parents have created an environment of respect and love for each member of their diverse family. They are to be praised!

    • @lucasgaleano550
      @lucasgaleano550 3 หลายเดือนก่อน +6

      ​@@tangogentThese kids need a life, not praise

  • @imdoneplus
    @imdoneplus 3 หลายเดือนก่อน +54

    1:47 this is such an important thing for him to share. Sadly, I don’t think people can understand this concept until they experience it. You can understand something intellectually, and not understand it emotionally. I appreciate him sharing.

  • @dk237
    @dk237 3 หลายเดือนก่อน +240

    The younger brother is amazing. He’s got a fantastic, positive attitude and interacts so well with Jonathan. You can tell they have a strong bond and Jonathan seems calm and relaxed around him.

  • @ascs4944
    @ascs4944 3 หลายเดือนก่อน +390

    I need to go make a donation to this channel asap
    I can’t thank you enough for doing this interview. I have a similarly vocal autistic son.
    For those who commented how overwhelming it was for them too watch. 1000% it’s overwhelming. More than you can possibly imagine. No, not everyone qualifies or is able to use respite care. We can’t use it because the only respite care available to us has the requirement that the disabled individual isn’t combative, aggressive, or harmful. To themselves or others. Our child is. Yes we need a break. No, we don’t get one. Ever. We needed a break years and years ago.
    So as difficult as it is to watch, please, take this as a lesson. These families exist everywhere. You don’t see them often because we do limit our time out in public because we aren’t given grace. We aren’t given help. Our other children deserve to live. We aren’t bad parents for having more kids. We are putting in 1000% 24/7. We are pouring from empty cups. As much as people claim that “there’s help available”, I don’t see anyone offering it. And even less giving grace. In fact, I’ve yet to take my child to a public space and have one outing where we don’t have comments, staring, shunning, and in some cases been asked to leave or have authorities called. The world is an unforgiving place.

    • @ericaroundtree457
      @ericaroundtree457 3 หลายเดือนก่อน +24

      Your empathy whilst going through your own heartache and journey is beautiful. While no one asks for such hard journeys most people like you and this family shine so strikingly beautifully and different. I think about what the Father above said, that He is closest to the broken hearted. Not taking anything away from the daily battle you all fight. You all are lovely.

    • @Adnaw-n5l
      @Adnaw-n5l 3 หลายเดือนก่อน

      Amen ​@@ericaroundtree457

    • @ummtotos9385
      @ummtotos9385 3 หลายเดือนก่อน +10

      I pray you get help, support, and guidance in every way.
      There are still good people in the world. I pray God sends them your way. As for the mean ones, remember: you are far, far beyond who they are.

    • @Brodmann312
      @Brodmann312 3 หลายเดือนก่อน +6

      If you have a loved one that can spare the time, please have them reach out to all of your elected officials, at every level of government. Your family deserves care and assistance, and there are people that can help facilitate that, even in difficult situations. If specialized respite isn't currently available in your immediate area, it is the job of our politicians to petition for the creation of it for their constituents. I hope help comes soon.

    • @nightyew2160
      @nightyew2160 3 หลายเดือนก่อน +5

      Thank you so much for your comment and sharing your experience with us. I hope your community can get to be more understanding and make space for your family and your child. Perhaps talking with someone who oversees a space you would like to be able to go with your child could generate ideas for how to make it work for everyone. They say it takes a village to raise a child. You shouldn't have to be so isolated.

  • @DoublingJourneyers
    @DoublingJourneyers 3 หลายเดือนก่อน +66

    Extremely humbling video

  • @pippareid1894
    @pippareid1894 3 หลายเดือนก่อน +418

    The other children feel safe to answer your questions truthfully how they feel. It is very hard for siblings when so much attention is given to one sibling. They will hopefully take their learning with them in life.They all have my respect.

  • @brittanyjordan7725
    @brittanyjordan7725 3 หลายเดือนก่อน +227

    My son was lead poisoned as an infant because it was allowed for a property to be sold to us that was heavily contaminated (we didn’t know) The EPA was fully aware of how bad the property was and they never condemned the property like they should have. My son is 7 years old now and he is non-verbal and global development delayed

    • @randomdude7345
      @randomdude7345 3 หลายเดือนก่อน +38

      Someone should get life sentence for that.

    • @888iya
      @888iya 3 หลายเดือนก่อน +10

      Почти все патологии из за отравления тяжёлыми металлами и их соединениями, и часто эти отравления носят криминальный характер. Очень жаль, я вас понимаю❤.

    • @absolutelyridiculous6743
      @absolutelyridiculous6743 2 หลายเดือนก่อน +7

      Where was this?! Omg I'm so sorry

    • @elkende
      @elkende หลายเดือนก่อน

      Could you be able to sue? Were you informed about contamination before purchase?

    • @BloodSweatandFears
      @BloodSweatandFears หลายเดือนก่อน +6

      You should talk to a lawyer. That sounds like someone should be liable. I’m sorry it must be so stressful and painful. ❤

  • @conradtodd9010
    @conradtodd9010 20 วันที่ผ่านมา +18

    That dads speech at the end was him trying to encourage himself to keep going... there clearly at there breaking point.

  • @reneefayant-lueck5112
    @reneefayant-lueck5112 3 หลายเดือนก่อน +508

    The environmental factors in India remind me of the "Cancer Alley" in the USA. Something needs to be done about it. This family seems wonderful. Thank you for sharing their story

    • @chuckthebrindlepittie6820
      @chuckthebrindlepittie6820 3 หลายเดือนก่อน +3

      ​@@shelzmikeNo in vitro testing available?

    • @robertwilliams5618
      @robertwilliams5618 3 หลายเดือนก่อน +20

      Where's the cancer alley?

    • @JourneytoGao
      @JourneytoGao 3 หลายเดือนก่อน +17

      1 in 1,000 having a birth defect that affects 1 in 100,000 is crying for action.

    • @malinia.20
      @malinia.20 3 หลายเดือนก่อน +2

      @@shelzmike Finally someone who gets it!

    • @letshaveacuppa_official
      @letshaveacuppa_official 3 หลายเดือนก่อน

      This did not come from the environment. Doctors will tell you anything when they can’t figure it out. I’m living proof.. over a year and tons of different doctors before they can diagnose me with what I have which is in invisible. Miss diagnosed so many times.

  • @danielheld6111
    @danielheld6111 3 หลายเดือนก่อน +174

    As a father of a special needs child, this dad made me cry and scream hallelujah with that speech at the end!

  • @yanamay6098
    @yanamay6098 22 วันที่ผ่านมา +23

    Honestly, I don't understand why pretend that everything is fine if it's not . Why not talk about how hard it really is. I feel very sorry for these parents, it's terrible.

    • @Danzo1212
      @Danzo1212 14 วันที่ผ่านมา

      He could be a super star though on like exorcist movies, he could have a good career

  • @Treegulf
    @Treegulf 3 หลายเดือนก่อน +363

    Mad props to Mom and Dad from a Dad. You are truly a light to what parents should be

    • @courtney9212
      @courtney9212 3 หลายเดือนก่อน +15

      Amen 💯

  • @dianagumas3777
    @dianagumas3777 3 หลายเดือนก่อน +166

    Thank you SBSK for giving us a glimpse into life with a profoundly disabled person like Jonathan. The other day I was in a store and a mom came in with a daughter who was vocalizing loudly. Before SBSK I’m ashamed to say I would have probably been annoyed and perhaps judgmental. But instead I walked over and said hello and the mom smiled at me. My heart goes out to this family and I hope things somehow get easier .

    • @MrsRachelleTX
      @MrsRachelleTX 3 หลายเดือนก่อน +6

      This is why I love watching these interviews. It teaches me and more importantly it humbles me. Thank you for sharing your experience too. ♥️

    • @SunshineBear1211
      @SunshineBear1211 3 หลายเดือนก่อน +1

      Your comment made me tear up because it means ALOT to me that you went up and said hello instead of being judgmental. That’s huge! ❤ I wish more people would do that to me and my son when we have to go in public. We stay home mostly because it’s really taxing to take him anywhere.

  • @manhattanmama4192
    @manhattanmama4192 12 วันที่ผ่านมา +13

    I can’t imagine being these parents. You can tell they are exhausted. I give them a lot of credit for keeping him at home and raising him there for 18 years. To be honest, as a parent, I know I could not do what they do.

  • @sandrarenner4402
    @sandrarenner4402 3 หลายเดือนก่อน +740

    How tough this must be on the whole family on a daily basis. The parents look exhausted
    This is really hard to watch 😢

    • @TedBear1954
      @TedBear1954 3 หลายเดือนก่อน +44

      I agree - but I am glad Chris has presented Jonathan and the family to us - we now know that people like Jonathan exist - and what the family experience is like - and its now time to start looking at the environment and doing more to prevent things like this happening. We know about them now - what will we do about it.

    • @ResurrectedinTruth
      @ResurrectedinTruth 3 หลายเดือนก่อน

      him*

    • @HabitualJoker
      @HabitualJoker 3 หลายเดือนก่อน +14

      When the parents aren’t around, it’s going to be on the other kids to take care of him.

    • @catrice1296
      @catrice1296 3 หลายเดือนก่อน +38

      I think the youngest daughter is the most done. She looks like she wants to leave as soon as possible. Hopefully they can get more help.

    • @blairariavanderkamp3405
      @blairariavanderkamp3405 3 หลายเดือนก่อน +19

      ​@@HabitualJoker That's not right. The parents need to put a plan in place so that doesn't happen.

  • @TakaiDesu
    @TakaiDesu 3 หลายเดือนก่อน +343

    People comment here as if the parents are not gonna read this! Parents, If you’re reading this, You’re much stronger than you think. We understand you tried your best to keep positive and cheerful during the interview, but it’s very easy to see your overwhelmm, its okay to be tired, And it’s OK to ask for help, A lot of cheers from Brazil. I am a fan of your strenght! Hugs!

    • @MJJUnmaskersOficiall
      @MJJUnmaskersOficiall 3 หลายเดือนก่อน +4

      Olha,br por aqui

    • @migamilan
      @migamilan 3 หลายเดือนก่อน +2

      It's to be expected when you share your life with the public

    • @annapaulineogrady9184
      @annapaulineogrady9184 3 หลายเดือนก่อน

      Amen beautiful grace help this family amen

    • @mirtesmoreirarezende6605
      @mirtesmoreirarezende6605 2 หลายเดือนก่อน +1

      Existe algum medicamento para que ele fique menos estressado?

    • @le-bw6xn
      @le-bw6xn 20 วันที่ผ่านมา

      Brasil aqui também.

  • @mrsweaver100
    @mrsweaver100 3 หลายเดือนก่อน +345

    My heart aches for this Momma, she is lost in this. She is struggling to speak, smile, express who she is.... If ahe knows who she is anymore.
    Props for Dad, he is the glue.
    Siblings need a break, their own identity and a reward.

    • @Lemons19902010
      @Lemons19902010 3 หลายเดือนก่อน +49

      This whole family needs a 2 week vacation away from Jonathan to reconnect to themselves outside of being caretakers.

    • @godforlife21
      @godforlife21 3 หลายเดือนก่อน +28

      Everyone is not comfortable being recorded or speaking in front of others.

    • @laylahahmad6468
      @laylahahmad6468 3 หลายเดือนก่อน

      @@Lemons19902010they need 2 weeks vacation every couple of months for the rest of their lives

  • @yonakana1247
    @yonakana1247 3 หลายเดือนก่อน +420

    Gonna show this video to whoever doesn’t believe pollution is a serious issue. Hope Jonathan will get better, if such a thing is possible.

    • @Notaravisen
      @Notaravisen 3 หลายเดือนก่อน +40

      Eyes and brains will unfortunately never have a magical bettering, but one can try to maximise the abilities of a person ever longer and longer. But these conditions are incurable.

    • @chuckthebrindlepittie6820
      @chuckthebrindlepittie6820 3 หลายเดือนก่อน +5

      ​@@NotaravisenUndetectable in vitro? No prenatal/in vitro diagnosis?

    • @ak47alice
      @ak47alice 3 หลายเดือนก่อน +6

      Just go to India

    • @victoriajohnson4420
      @victoriajohnson4420 3 หลายเดือนก่อน

      @@chuckthebrindlepittie6820 DiGeorge Syndrome is definitely detectable prenatally.

    • @scillavanilla5356
      @scillavanilla5356 3 หลายเดือนก่อน +2

      These are the people who would complain about having a child like that out in public “making a scene”

  • @t-tokyo9107
    @t-tokyo9107 3 หลายเดือนก่อน +192

    Dad's honesty and rawness is so touching; so often, we get to hear about mom's experience.

  • @Immagiraffe101
    @Immagiraffe101 2 หลายเดือนก่อน +12

    Oh my lord, I can’t even imagine having this as reality every single day. You both are so strong.

  • @bruhmoment3306
    @bruhmoment3306 3 หลายเดือนก่อน +544

    As a sibling to a brother with severe disabilities, I understand alot of people having sympathy for Jonathans siblings. That said, some people are being downright rude about Jonathan and thats unacceptable. While it was hard to deal with the lack of attention + needing to help my sibling with daily tasks, its not something I would ever hold against him in the slightest. Not to mention I feel worse for him than anyone should ever be feeling for me, at least I can grow out of my situation, whereas disabilities are lifelong. Once again, I get having sympathy for his siblings, just dont be hateful towards him. His siblings wouldnt want that.

    • @purplepeopleeater6880
      @purplepeopleeater6880 3 หลายเดือนก่อน +53

      Thankyou for your valuable insight. It's obvious Jonathan is very loved and valued by his family. Some of these comments are painful to read

    • @Mtz2604
      @Mtz2604 3 หลายเดือนก่อน +13

      Well said

    • @operababe0588
      @operababe0588 3 หลายเดือนก่อน +29

      Thank you for sharing this. I was upset about others responses but didn’t know how to address it. Your perspective is valuable and I hope those rude commenters or people that are just unable to understand read what you wrote.

    • @lenmorenox
      @lenmorenox 3 หลายเดือนก่อน +15

      Exactly! Finally a sane person in this comment section

    • @cindypowell6358
      @cindypowell6358 3 หลายเดือนก่อน +10

      Beautifully & very well said. I couldn’t agree with you more. 🙏❤️🙏

  • @celes42017
    @celes42017 3 หลายเดือนก่อน +481

    This is an interesting case. I’ve been working with disabled people my entire life. I’ve never seen a case like this. His symptoms are closely resembling autistic features. I hear him trying to communicate. He does know how to say some words if you listen very closely.
    He understands what people are saying 100%. The noises are a stimming sensation for him. Jonathan is an incredible young man. I’m wondering if there’s chemical involvement from air inhalation.

    • @celes42017
      @celes42017 3 หลายเดือนก่อน +54

      His brother is a fantastic younger brother.

    • @amandamadyara5635
      @amandamadyara5635 3 หลายเดือนก่อน

      😂you’re a joke. You’ve babysat a child with autism not any autistic-like symptom you see is autism. Go read a pathology textbook dear

    • @chuckthebrindlepittie6820
      @chuckthebrindlepittie6820 3 หลายเดือนก่อน +26

      Could his many tragic disabilities not have been detected in vitro? Prenatal?

    • @SwissMissss
      @SwissMissss 3 หลายเดือนก่อน

      If they were, what would they have been able to do about it?​@@chuckthebrindlepittie6820

    • @victoriajohnson4420
      @victoriajohnson4420 3 หลายเดือนก่อน +22

      Interesting. The incidence of DiGeorge Syndrome is about 1 in 1,000 births, with somewhere between 500 and 750 new cases diagnosed each year in the US. Not all are as severe as Jonathan.

  • @Mike-n6u9t
    @Mike-n6u9t 3 หลายเดือนก่อน +18

    you can see the stress written on the mother's face

  • @gartrek28
    @gartrek28 3 หลายเดือนก่อน +606

    Mom definitely needs and DESERVES at least a week of pampering. 🥰

    • @julievanderleest
      @julievanderleest 3 หลายเดือนก่อน +55

      When one has kids, it’s easier for moms to forget about themselves but when one has kids that are handicapped, it’s pretty much impossible to care for themselves. Even if this mom gets a gift to a resort and spa, it’s likely that she wouldn’t get a chance to use it.

    • @tawnywitch
      @tawnywitch 3 หลายเดือนก่อน +31

      @@julievanderleest Or even not feel comfortable leaving him, I have a 35 year old son who has DS and have never accepted outside help, I just wouldn't feel confortable.

    • @marthadoane6875
      @marthadoane6875 3 หลายเดือนก่อน +16

      @@tawnywitch Same situation here. We have two adult Children with DS. We don't really get away, as we do not want to ask the siblings. They will have to step in when we are gone.

    • @islandgirl7519
      @islandgirl7519 3 หลายเดือนก่อน +21

      I'd say them both. ❤

    • @paulx7620
      @paulx7620 3 หลายเดือนก่อน

      ​@@islandgirl7519absolutely so glad someone else sees this.

  • @celiabonadies5667
    @celiabonadies5667 3 หลายเดือนก่อน +689

    The noise level would be unbearable for me. I hope these parents get respite care.

    • @a.j.marcantonio153
      @a.j.marcantonio153 3 หลายเดือนก่อน +123

      Same here, I didn’t end up watching the entire video because Jonathan’s noises were too loud for me to handle.

    • @robertwilliams5618
      @robertwilliams5618 3 หลายเดือนก่อน +35

      ​@@a.j.marcantonio153yea hurt my ears

    • @aliciakillen1940
      @aliciakillen1940 3 หลายเดือนก่อน +18

      Yeah. Same

    • @MaynardsSpaceship
      @MaynardsSpaceship 3 หลายเดือนก่อน +59

      He was also overstimulated.

    • @Deadpool4president
      @Deadpool4president 3 หลายเดือนก่อน +35

      I put it on mute and read the subtitles

  • @jessicaeverly47
    @jessicaeverly47 หลายเดือนก่อน +23

    I dont wish this on absolutely anyone

  • @TinyTRexArms
    @TinyTRexArms 3 หลายเดือนก่อน +414

    I feel empathy for his siblings.

    • @jonnylumberjack6223
      @jonnylumberjack6223 3 หลายเดือนก่อน +37

      I really, really hope they all get a significant amount of counselling. I was the younger sibling of a chronically ill sister and I didn't get counselling and it's kind of messed up my life. It's really hard, as a child, to know that you are not a priority, even when you know there is a good reason for it.

  • @beckys7884
    @beckys7884 3 หลายเดือนก่อน +863

    This has to be the most uncomfortable video I've seen in a long time. This family needs help, those kids need help. I feel bad for them.

    • @lindak3030
      @lindak3030 3 หลายเดือนก่อน +259

      Every one of the other kids seems traumatized. Dad's talking about things getting better, meanwhile his oldest daughter is lighting up talking about how great it was to go away and the son just resents that he was not "an emergency" for his childhood. The youngest daughter looks haunted.

    • @allisonvaughn
      @allisonvaughn 3 หลายเดือนก่อน +126

      I agree. The kids look extremely depressed … I can’t imagine what they must feel. Even brother said he was resentful. :(

    • @angie4800
      @angie4800 3 หลายเดือนก่อน +208

      I feel troubled by the fact that the parents had more children after being aware of what Jonathan's care was going to entail. It feels like doubling down on a difficult situation and inconsiderate of the younger childrens' lives.

    • @azzaakos1284
      @azzaakos1284 3 หลายเดือนก่อน +84

      @@angie4800 i was thinking the exact same thing! i believe johnathan was their 3rd kid and then they had joshua and the youngest daughter after that. interesting choice for sure considering that their youngests' lives both revolve around johnathan, which they must have known

    • @HabitualJoker
      @HabitualJoker 3 หลายเดือนก่อน +36

      @@angie4800I would think they were probably hopeful they would have children that were “normal”.

  • @OneOfTheGorls
    @OneOfTheGorls หลายเดือนก่อน +51

    "10% chance of survival at birth, we tried to keep him alive" if he was my baby, I'd have held him close, kept him warm and loved and let him pass on. I don't have the tolerance to live like these parents do, they have incredible strength but i couldn't do it.

    • @mikeguidry2577
      @mikeguidry2577 28 วันที่ผ่านมา +19

      They probably didn't understand that it'd lead to this. Babies are more or less the same even if mentally handicapped at a month old.

    • @briannadickson2884
      @briannadickson2884 27 วันที่ผ่านมา +7

      This is why you just let them go....

    • @helenTW
      @helenTW 26 วันที่ผ่านมา +2

      Completely agreed.

    • @mamycrazycrazy3935
      @mamycrazycrazy3935 25 วันที่ผ่านมา +4

      De acuerdo contigo,nó por mí si no por el,sufrimiento de mi bebé,esto,nó debería estar permitido

  • @maxinepreston7601
    @maxinepreston7601 3 หลายเดือนก่อน +246

    I usually love seeing the families on here, the siblings interactions. I found this video very difficult to watch as I'm sure others have. They are a lovely family and doing a wonderful job with what life has been given to them. I hope they get some respite as a family because looking after someone so profoundly disabled can eventually get too much. I wish them all well. 🇬🇧edit:-can i just say its not his disability that made it difficult to watch, but i just felt so sad for his siblings as he needs so much of the parents time.

  • @belantww
    @belantww 3 หลายเดือนก่อน +1152

    This is probably the first episode of SBSK that made me uncomfortable to watch. The parents seem so incredibly stressed out and the children are parentified. I hope they have professional support in caring for their son so that less of his care lands on the children.

    • @lisalynnmarie2448
      @lisalynnmarie2448 3 หลายเดือนก่อน +168

      It was struggle for me to watch all the way as well.

    • @lxdiaa
      @lxdiaa 3 หลายเดือนก่อน +24

      @@lisalynnmarie2448yeah…

    • @JohnSmith-bk6ec
      @JohnSmith-bk6ec 3 หลายเดือนก่อน +309

      I feel this way about a lot of these episodes. Everyone comments wow what a great family but it’s clear everyone has severe ptsd and chronic stress.

    • @adriannamatos865
      @adriannamatos865 3 หลายเดือนก่อน +213

      I agree. My heart breaks for those parents and their other children. How can any sane person deal with this every second of every hour of every day? They have no quality of life. He should be put a supportive living program where he can visit on weekends. I wouldn’t be able to last a day caring for him and his parents are exhausted.

    • @neva.2764
      @neva.2764 3 หลายเดือนก่อน +168

      ​@@adriannamatos865 It's not up to you to say what these parents should or shouldn't do.

  • @KimberlyScott-eb5rz
    @KimberlyScott-eb5rz 3 หลายเดือนก่อน +61

    Jonathan’s dad is truly a hero (and mom and siblings too obviously!!!) but dad clearly has extreme empathy, you can see he is the rock of this family and what a blessing to his family that is. How AMAZING. There are dads that walk out on neurotypical children but this dad has the toughest job in the world and he is there with a smile and love and understanding and faith clearly since he mentioned prayer. God sees you, all of you and you’re amazing people. I’m blown away by your love and resilience, God bless you all. I will keep you in my prayers thank you for sharing your story

    • @pax8129
      @pax8129 3 หลายเดือนก่อน +1

      THIS ❤

    • @worldonfire1539
      @worldonfire1539 2 หลายเดือนก่อน

      My sentiments exactly! 👏💙

  • @ToriOfTheNile
    @ToriOfTheNile 3 หลายเดือนก่อน +64

    Wow, everybody in this family, including Jonathan, seem so overwhelmed and exhausted and resolved in this being how they’ll have to live and feel. I so applaud them for their patience, unconditional love, commitment and dedication to this boy who needs such affection more than anyone could imagine. They’re all angels 😢

  • @azzaakos1284
    @azzaakos1284 3 หลายเดือนก่อน +122

    what the siblings had to say really struck me, especially the part about their whole identity and existence revolving around their brother. having most parental attention given to a sibling that you also have to "parent" must make a strained family dynamic. 18 years in a row is a lot of work. this family needs a break.

    • @KimSpurre104
      @KimSpurre104 3 หลายเดือนก่อน +3

      Even with all the available siblings maybe hiring someone to help (if affordable) might have been a good idea .

    • @Soprano1638
      @Soprano1638 3 หลายเดือนก่อน

      No, not really. Sometimes you don't get those feelings because that's your family, that's your sibling ❤

    • @4lmighty_L0af
      @4lmighty_L0af 3 หลายเดือนก่อน +14

      @@Soprano1638 definitely not. it sucks and is exhausting and you will get mentally ill

    • @Magratka
      @Magratka 3 หลายเดือนก่อน +14

      @@Soprano1638 words "family" and "sibling" are not a magic remedy for mental health struggle.

    • @Soprano1638
      @Soprano1638 3 หลายเดือนก่อน +2

      ​@@Magratka there's no need to plant words, I never said that at. I am saying that lots of people have parents they care for, or their spouse and so on. They don't necessarily view this as anything other than supporting the family member they love, who would do the same for them if they could. I am one of those people, it is not a burden or stress for me at all. If you feel mentally unwell due to it then that's valid, but you can't assume everyone feels the same way.

  • @Dsgavidia
    @Dsgavidia 2 หลายเดือนก่อน +9

    Chris I would love to see you do a piece on the impact on ‘glass children’ who have siblings with disabilities. I’m sure it is a sensitive topic for caregiver parents, but having seen scores of your videos, it is apparent that most of the family emotional and physical resources are focused on the child with special needs. The neurotypical siblings are ‘invisible’.

  • @carenfeldman8854
    @carenfeldman8854 3 หลายเดือนก่อน +232

    My heart is breaking. The whole of the family's attention and emotional resources are directed towards Johnathan to keep him happy, whatever that might mean to him. As heroic and self-sacrificing as the parents are for taking on this extraordinary task of caring for Johnathan at home, you can see the toll it's taken a toll on everyone no matter what kind of happy face they put on it. I hope they can find a permanent arrangement for Johnathan's future adult life that is outside the home. To think of the parents keeping this up well into their retirement years or "passing the baton" to one or more of the siblings is just so unfair.

    • @jeannetrinidad8712
      @jeannetrinidad8712 3 หลายเดือนก่อน +35

      Well said! And I totally agree with you and hope the same for the family that Jonathan can be placed in a safe & caring facility so that the family don't have to have 100% care for him for 50 or more years. Especially the kids. Once the parents are gone, it wouldn't be fair that the siblings have to care for him because it seems like they have been helping the parents care for him ever since they were able to help and it seems like they resent it.

    • @Deadpool4president
      @Deadpool4president 3 หลายเดือนก่อน +9

      "heroic and self-sacrificing" seems like a messed up way to describe parents of a disabled child. They gave birth to a child with special needs. Doing their best to meet those needs doesn't make them heroes

    • @ascs4944
      @ascs4944 3 หลายเดือนก่อน +12

      Unfortunately for a lot of families those resources aren’t available and the siblings do end up taking care of them. It’s a nice thought, but having to live thru this personally, there is no help. This is where the voices and actions of others is important. We can’t get the help we need if all anyone does is says “this family deserves and needs help”. We need people to actually provide help and fund those things.

    • @milesp2295
      @milesp2295 3 หลายเดือนก่อน

      ​@ascs4944 you have no clue what your talking about

    • @milesp2295
      @milesp2295 3 หลายเดือนก่อน +2

      ​@@Deadpool4presidentdefine hero ..karen

  • @Eliza_Stew
    @Eliza_Stew 3 หลายเดือนก่อน +37

    “There will always be things in life that go a different direction than you expect”
    I know this just rolled right off that man’s tongue like he didn’t even think about it but those words ring so true. It’s a vital thing to understand, especially when you’re young.

  • @kardonay
    @kardonay 3 หลายเดือนก่อน +9

    Sounds like Dad has really grown through this. Good for you Dad. Good for you. Best of luck, mate

  • @lovevelvetbones7507
    @lovevelvetbones7507 3 หลายเดือนก่อน +40

    I've seen all the videos on your channel through the years and I think that this one has probably been the hardest one. The siblings' honesty is on point and refreshing though.
    A big hug to this beautiful family!

  • @avasbaba
    @avasbaba 3 หลายเดือนก่อน +44

    That is one great dad. I hope the best for all of them.

  • @limeamoeba7664
    @limeamoeba7664 23 วันที่ผ่านมา +3

    Jonathan is very attached and calm with his younger brother and it’s very obvious they have a deep connection. It’s very sweet. I love how he sings much like our friend Darius!

  • @vlastabarac
    @vlastabarac 3 หลายเดือนก่อน +63

    This is so hard😢 i am so sorry for other kids. They deserve so much good in life

  • @carahowell4260
    @carahowell4260 3 หลายเดือนก่อน +278

    I think the stress people are seeing is that trying to keep Johnathon still upsets him and they are trying to do the interview as best they can while Johnathon protests. Obviously everyone is stressed and the other children have been left out. Its a hard dynamic when there is a severe disability. I hope they can have people come in to help them. ❤❤❤ Thank you for your honesty and willingness to share your story. And we should never make judgments when we have not walked in thier shoes.

    • @babysnister
      @babysnister 3 หลายเดือนก่อน

      I hope they have access to respite care so they can get time off! I used to do respite work so that parents could have date nights, go to their other kids' special events, etc. I know a family that has such a strong network of respite helpers that the parents are able to go on weekend trips alone too. There are communities of support and trust out there. I can't judge whether this family has that just from a 17-minute video, so I'll just say I hope they have found that community of care.

    • @monolyn
      @monolyn 3 หลายเดือนก่อน +6

      Yeah they should've just done the whole thing centered around where Johnathon wanted to be versus where the best camera shots are. He didn't want to sit down or around the couch much if at all.

  • @sarakyoutube
    @sarakyoutube 3 หลายเดือนก่อน

    I have been following your channel for years and years. I have learned and acquired beyond what can be put into words simply by watching your videos and reading through the comments; I am forever thankful. I now have a job which cares for and supports adults with IDD. I see all these past years of watching your channel as being a huge foreshadow... I would have never in my right mind imagined me having the job I now have and it has opened my eyes to an entirely new reality. The comments are right, there are so many families and parents who need so much more support and help caring for such unique individuals than they are given. It is no easy and so many of us, including myself, can be blind to all the struggles and complications that these familes face day in and day out. I just wanted to thank you for shedding so much light on something that many are uncomfortable or confused by. We are all humans experiencing such a remarkable and spectacular life, we just have to remember to always be kind, understanding, and open to having our views and perceptions changed. Thank you for giving these individuals a platform and voice.

  • @cindysemblante4411
    @cindysemblante4411 3 หลายเดือนก่อน +62

    What a caring, kind,and gentle spirit this father has. It’s amazing that his brother is so attentive and understands what Johnathon wants. I hope this young man has lots of time in his hammock, listening to the birds and feeling a warm breeze. Beautiful family who have learned to roll with punches and live a good life every day

    • @NateEmail
      @NateEmail 3 หลายเดือนก่อน +1

      Yeah the brother seems very loving towards him and I couldn't imagine my dad being that patient and kind lol

  • @MaxItUpwithMarta
    @MaxItUpwithMarta 3 หลายเดือนก่อน +23

    I have never been so moved listening to the family members of your guests as I have today. That dad is so special.

  • @happysmileylips
    @happysmileylips 3 หลายเดือนก่อน +3

    What a humbling statement from the dad! Johnathan just touches my heart with his joyfulness! Can I have a big hug please!?
    Amazing parents! God bless y'all!

  • @ihatehandles111
    @ihatehandles111 3 หลายเดือนก่อน +18

    Those parents are far better humans than I ever will be. Huge props to them for doing this interview.

  • @ameliesayshola8854
    @ameliesayshola8854 3 หลายเดือนก่อน +127

    This is the second video I’ve seen on this channel where the entire family seems exhausted and where I really feel for the siblings. What are the long term plans for his care? Are the siblings expected to step in at some point when Mom and Dad are older and not as physically able to care for him? If the siblings start their own families, taking on Jonathan’s care would be pretty much impossible. I know the parents are doing their best but this kind of situation seems so exhausting for everyone.

    • @reignofbastet
      @reignofbastet 3 หลายเดือนก่อน +17

      This is exactly what I’m thinking about. I have a cousin whose severely disabled (b. 71), and she eventually had to be put in a home. It ended up being fantastic for her, but not everyone has facilities near them that can accommodate his level of disability. I love it when it cuts from an edit, and we see mom with a genuine smile on her face. I feel for anyone in their position.

    • @ameliesayshola8854
      @ameliesayshola8854 3 หลายเดือนก่อน +7

      @@reignofbastet that’s great for your cousin! I’m so glad she can live in a place with the care she needs and her family can drop in and visit I’m assuming. And it allows family members to live their lives and not have to be solely focused 24/7 on someone with severe disabilities. I do think at some point this family should consider this if there are facilities nearby that could care for Jonathan. And if there aren’t, moving eventually to a place where there is one would be the solution I think. The parents will not be able to care for Jonathan forever and I highly doubt his siblings would want to take on that role (it also isn’t fair to them either.)

    • @reignofbastet
      @reignofbastet 3 หลายเดือนก่อน +6

      @@ameliesayshola8854 I wholeheartedly agree. When they’re older, he’s going to seem so much stronger. It’s sad they may have to move to get him care. And yes, my cousin is in a *fabulous* care home, I wish they were all like it. I hope your day is well!

    • @zoedo3125
      @zoedo3125 3 หลายเดือนก่อน +5

      There are government programs for him if family chooses to go with that route

    • @kiara6237
      @kiara6237 หลายเดือนก่อน +5

      I don't even think the state Jonathan lives is moral... he struggles to be a complete human. Imagine never being able to properly speak, always fighting against your own brain, all the time knowing that you're a burden for everyone of your family. That is not life.

  • @PaulLoveless-Cincinnati
    @PaulLoveless-Cincinnati หลายเดือนก่อน +10

    I was going to disregard the environmental factors until i heard he was in gestation while in India.

  • @erinwright3351
    @erinwright3351 3 หลายเดือนก่อน +11

    Incredible, enlightening, powerful interview. I feel humbled when I see this family. My family has struggles with my disabled sister, but it is nothing compared to this.

  • @marisolsilva1562
    @marisolsilva1562 3 หลายเดือนก่อน +66

    My neighbor is severely autistic and screams a lot. I have gotten used to it, but at the beginning, when they just moved, I must say it did bother me. However, I never, ever even entertained the idea of complaining to his parents or, worse, call the police. That's not only rude, but plainly stupid. It's not that he is doing it on purpose, he can't help it and that is, period. We all deserve a space in this world. The beach episode... infuriating. Much respect to this brave, loving and caring family.

  • @sarahthomas7815
    @sarahthomas7815 2 หลายเดือนก่อน +70

    Is it just me, or was he trying to bite his dad on the hand in the beginning just for dad trying to get him to sit down? I am haunted by the youngest daughter and how vacant and lost she looks.. and mom looks totally exhausted. What a sad situation, I can’t imagine.

  • @Jitmommy33
    @Jitmommy33 3 หลายเดือนก่อน +19

    To the family: THANK YOU for your authenticity. I understand more than you could possibly know. I’m exhausted, too. But I’m going to be as happy and positive as I can while working with what I have.
    You showed me strength, love, and openness within the family to communicate their feelings.
    So these are for you
    🌟🌟🌟🌟🌟 5 stars! ✨ it’s the best I can do. Sending you gentle love and prayers. Sending you relief from guilt, all of you.
    I’m so proud of you.

  • @AbraMacabreXx
    @AbraMacabreXx 3 หลายเดือนก่อน +42

    Sbsk is the best channel on youtube. Instead of making lame dance videos or prank videos and garbage content to get likes, you are helping people and making content that teaches people about disabilities and what their families go through. The positive impacts of what youre doing will have a ripple effect of positivity and i wish we had more people in the world like you.

  • @Chris-tb1og
    @Chris-tb1og 21 วันที่ผ่านมา +5

    This is absolutely heart breaking.

  • @HappyT111
    @HappyT111 3 หลายเดือนก่อน +34

    I work with young adults and children with profound disabilities but I can give them back to parents at the end of each day. I so admire the parents and carers of these special people. We learn so much from our young charges ❤

  • @Junior_Berdtt
    @Junior_Berdtt 3 หลายเดือนก่อน +72

    How sad to have to live with this. It must be very tiring, you can see how exhausted they are on the parents' faces 😢

    • @Angel-rq3pi
      @Angel-rq3pi 3 หลายเดือนก่อน +12

      When Dad was talking about dx he looked like he was gonna cry at one point

    • @Junior_Berdtt
      @Junior_Berdtt 3 หลายเดือนก่อน +2

      @@Angel-rq3pi exactly

    • @deiov
      @deiov 3 หลายเดือนก่อน +7

      i honestly find it more sad when people have pity, pity is treated like dirt. it's very different from empathy.

  • @1004cheonsagateun
    @1004cheonsagateun หลายเดือนก่อน +4

    That dad makes me want to cry. I want to give him a big hug. Dont give up Dad. You are outstanding

    • @mikeguidry2577
      @mikeguidry2577 27 วันที่ผ่านมา +1

      He certainly has all my respect. Have no idea how he does it.

    • @OhHeckNono
      @OhHeckNono 24 วันที่ผ่านมา +1

      He's sacrificing his other children and wife just to be with Jonathan 24/7....

    • @1004cheonsagateun
      @1004cheonsagateun 24 วันที่ผ่านมา

      @@OhHeckNono yeah...his life is very difficult.

  • @ARTWV
    @ARTWV 3 หลายเดือนก่อน +57

    I can’t imagine how hard life can be but I wish them happiness in life.

    • @Djrob515
      @Djrob515 3 หลายเดือนก่อน +1

      I honestly couldn’t do it. Props to Them for roughing it out

    • @ARTWV
      @ARTWV 3 หลายเดือนก่อน +1

      @@Djrob515 I would think if he were your child you could do it.

    • @Djrob515
      @Djrob515 3 หลายเดือนก่อน

      @@ARTWV who knows I’m not sure I would want to

    • @ARTWV
      @ARTWV 3 หลายเดือนก่อน

      @@Djrob515 do you have kids respectfully?

    • @tiniestbun
      @tiniestbun 9 วันที่ผ่านมา +1

      but please also imagine how hard it is to be him. please imagine that too.

  • @rhondaphillips1479
    @rhondaphillips1479 3 หลายเดือนก่อน +11

    Ohhhh my gosh !!!....Jonathan seems like a lot of work ! I hope this family gets outside support. God Bless this family !

  • @sarahdd123
    @sarahdd123 2 หลายเดือนก่อน +6

    My god they all look so tired, so broken. Bless them for how much they care for him. I just couldn’t do it, honestly

  • @dilemma6571
    @dilemma6571 3 หลายเดือนก่อน +69

    As a special needs teacher, I have total admiration for this family. ❤ I feel that they could all do with some respite though, either individually or as a family. As well as for their own wellbeing, it can also help to improve and/or maintain healthy relationships with each other and with Jonathan. I wish them all well - what a beautiful family. Xxx

    • @MrsRachelleTX
      @MrsRachelleTX 3 หลายเดือนก่อน +3

      I agree, they are a Beautiful family! I hope they get some respite too. 🙏

  • @evanoeevanoe810
    @evanoeevanoe810 3 หลายเดือนก่อน +20

    Amazing people, a truly loving mum and dad. God bless U and your wonderful family!

  • @pax8129
    @pax8129 3 หลายเดือนก่อน +2

    Dad is just simply amazing. Wow. Bless this family, thank you guys for sharing ❤

  • @taopaul1443
    @taopaul1443 3 หลายเดือนก่อน +25

    17:02 As a dad, deeply thank you for your support and wish you can get support and help as well.

  • @mooncakerabbithender7203
    @mooncakerabbithender7203 3 หลายเดือนก่อน +16

    I have so much respect for these lovely parents and the children who have dedicated their love and lives to dear Johnathan. As a mother of 2 sons with mental health issues I understand the different level of parentship we give. Our children are gifts that we continue to love and devote our life to without question. Thankyou Jonathan's lovely mother and father for giving us a special time with their beautiful son.

  • @isabelgonzalez5500
    @isabelgonzalez5500 3 หลายเดือนก่อน +6

    This is a lovely family. This interview is very inspiring. You can tell Jonathan is loved

  • @Ilovepeets
    @Ilovepeets 3 หลายเดือนก่อน +6

    Wow. What an incredibly strong family. And that message at the ending was absolutely beautiful...Spoken right from the heart. You know there is someone out there that needed to hear this today. Praying for you all right back. ❤

  • @joshuawayneyork
    @joshuawayneyork 3 หลายเดือนก่อน +8

    I commend these parents for all the love and care they show their child, I couldn't do it. It must take an extraordinary level of strength both mentally and physically .

  • @roxannerodriguez7075
    @roxannerodriguez7075 24 วันที่ผ่านมา +7

    I work in group homes with individuals like this young man. It is difficult at times. We really have to pay attention to, and learn their style of non-verbal communication.
    It seems to be more common for parents to keep their kids with special needs at home these days. Rather than placing them in institutions or group homes like in the past. (Usually by recommendation of their doctor.)
    But I just know, that sometimes it's just too much on the family. That's why I have a job! 😊
    I've been working in the field since I was 19. I'm 42 now. I've had plenty of chances to move up, but the reward to me, is the hands on, day to day work with people. People of all kinds! 💜
    I've worked with kids in the school district too. But my favorite people to work with are adults with special needs. Those who need 24 hour care, and more assistance than others.
    I just see something in them, that makes me truly care for them and their families. I know they're adult men and women. But to me, they are very child-like in the mind, and I love working with that adult "child".
    People might see Jonathan and get nervous. I see Jonathan and I kind of "fall in love". Not really, like a spouse or anything, lol. But I was blessed with the heart, especially for adults with special needs, who are just trying to live in this world, and live the best life they can, while they can.
    And I love being there to try and help make that happen. ❤ May God bless this family. 🙏 I pray they get the support they need. For Jonathan, and for themselves. Remember that "We can't pour from an empty cup!" God bless. ❤

    • @Danzo1212
      @Danzo1212 14 วันที่ผ่านมา

      The constant noises he makes would drive me insane i would have to put him in a care home

  • @emmymaria6173
    @emmymaria6173 3 หลายเดือนก่อน +17

    Jonathan, you are so fortunate to have the wonderful family you have ❤😊

  • @pollyannaprinciple5860
    @pollyannaprinciple5860 3 หลายเดือนก่อน +78

    The words that this father expressed were so inspirational. Needed to hear that today. I have several disabled cousins, a disabled sibling, disabled nephew/niece.

    • @chuckthebrindlepittie6820
      @chuckthebrindlepittie6820 3 หลายเดือนก่อน +8

      How o. Earth did that happen? No prenatal or in vitro testing available? Genetic counseling?

    • @malinia.20
      @malinia.20 3 หลายเดือนก่อน

      ​@@chuckthebrindlepittie6820 You are a eugenicist and so is everyone who liked this asinine comment. By the most conservative estimates, between one in four and one in five people in this country is disabled in some way or another. With long covid, those numbers are only getting higher.

    • @ALDCBoulevard
      @ALDCBoulevard 3 หลายเดือนก่อน

      @@chuckthebrindlepittie6820sometimes it just happens. I have a rare genetic disorder that’s been passed down on my mom’s side, but they all had mild cases so it wasn’t diagnosed until me. Often times, disability isn’t even genetic. It could just be happening.

  • @Soulkal1979
    @Soulkal1979 หลายเดือนก่อน +9

    And now I am reminded that I have nothing to complain about

  • @michellepoirier8365
    @michellepoirier8365 3 หลายเดือนก่อน +14

    If ever I had the great fortune to meet Jonathon I would jump at the chance to play the clapping game! I’m so glad I had been able to view this interview your family is incredibly special, and we are so grateful to meet you!