Living with a Mysterious Syndrome (Caused by Environmental Factors)

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Special Books by Special Kids

Special Books by Special Kids

Күн бұрын

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@SpecialBooksbySpecialKids
@SpecialBooksbySpecialKids Ай бұрын
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 Ай бұрын
I'm sure he enjoyed playing with you and that's what matters! 💕
@abdullahak2204
@abdullahak2204 Ай бұрын
I'm sure he had fun playing the clapping game with you !!!
@seventhtenth
@seventhtenth Ай бұрын
thanks man
@danielle5873
@danielle5873 Ай бұрын
Hi Chris love your videos I can be your videos please to meet with you ❤️❤️😘😘😎😎😎😘😘❤️❤️❤️❤️❤️
@AngelJuliet
@AngelJuliet Ай бұрын
You have such a loving soul I am sure you would never leave someone out
@loriehabel477
@loriehabel477 Ай бұрын
Mom seems so tired 😢 Dad is doing his best emotionally to hang in there. Seems like alot of love ❤️
@MarsLos10
@MarsLos10 Ай бұрын
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 Ай бұрын
I was thinking the same, she does looks so tired bless her
@TiviDorta-ik9br
@TiviDorta-ik9br Ай бұрын
I wonder: she is probably the one that spends most of the time with him. Hence, the tired demeanor.
@googleuser2480
@googleuser2480 Ай бұрын
I saw sadness
@rosimeiremoriggi9340
@rosimeiremoriggi9340 Ай бұрын
País fazendo.o.melhor por seus filhos. Deus os abençoe e fortaleça cada dia mais❤❤
@zaza-pn5pn
@zaza-pn5pn Ай бұрын
You can really see how tired they all are in their eyes, they need more support.
@nancymosby7369
@nancymosby7369 Ай бұрын
agreed
@DougieFootball
@DougieFootball 29 күн бұрын
****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 29 күн бұрын
Yeah poor family
@Lemons19902010
@Lemons19902010 29 күн бұрын
​@@DissapointedInYou what are you getting at?
@sunnydeessa714
@sunnydeessa714 29 күн бұрын
@@DissapointedInYou can u explain pls
@mitchellking4988
@mitchellking4988 Ай бұрын
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 29 күн бұрын
More like an angel, right?
@candicehochberg1607
@candicehochberg1607 28 күн бұрын
Definitely an earth angel 🎉❤😊​@@Jose-Gonzalez-cfl
@amber062499
@amber062499 27 күн бұрын
Amazing father ❤
@MrWhiteTank
@MrWhiteTank 26 күн бұрын
I was just thinking this too! 👏🙏
@potatojones1089
@potatojones1089 26 күн бұрын
An absolute warrior.
@KIskra
@KIskra Ай бұрын
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 Ай бұрын
Yes 💯
@Kaecie-dl1dk
@Kaecie-dl1dk Ай бұрын
"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 Ай бұрын
Beautiful said, thank you! 🙏🕊️
@lisao7600
@lisao7600 Ай бұрын
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 Ай бұрын
💓💓
@fabuloussnake6011
@fabuloussnake6011 Ай бұрын
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 Ай бұрын
@@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 Ай бұрын
@@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 Ай бұрын
@@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 Ай бұрын
@@Katherine_critters Take it easy… I wonder the same..
@levans3447
@levans3447 Ай бұрын
What a blessing your father is!
@TakaiDesu
@TakaiDesu Ай бұрын
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 Ай бұрын
Olha,br por aqui
@migamilan
@migamilan Ай бұрын
It's to be expected when you share your life with the public
@annapaulineogrady9184
@annapaulineogrady9184 22 күн бұрын
Amen beautiful grace help this family amen
@melissapoole8580
@melissapoole8580 Ай бұрын
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 Ай бұрын
Im sorry. It can be rough. Love to you and your son.
@BertTheBulldog
@BertTheBulldog Ай бұрын
You are strong, Miss Melissa! Keep going
@Suziesweetworld
@Suziesweetworld Ай бұрын
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 Ай бұрын
Me too. This reminded me of my son.
@WITHETSTORMXX
@WITHETSTORMXX Ай бұрын
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.❤
@accenttunebyellie
@accenttunebyellie Ай бұрын
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 Ай бұрын
I totally agree.
@cesia9954
@cesia9954 Ай бұрын
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 Ай бұрын
⁠@@cesia9954​​⁠ what a gift to find your comment, too
@blu.dru_
@blu.dru_ Ай бұрын
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 Ай бұрын
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
@brittanyjordan7725
@brittanyjordan7725 Ай бұрын
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 23 күн бұрын
Someone should get life sentence for that.
@888ei
@888ei 21 күн бұрын
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 Күн бұрын
Where was this?! Omg I'm so sorry
@YarbroK
@YarbroK Ай бұрын
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.
@starswan
@starswan 27 күн бұрын
@@YarbroK he belongs in an institution
@KimberlyScott-eb5rz
@KimberlyScott-eb5rz 29 күн бұрын
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 25 күн бұрын
THIS ❤
@worldonfire1539
@worldonfire1539 2 күн бұрын
My sentiments exactly! 👏💙
@Laura_G
@Laura_G Ай бұрын
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 Ай бұрын
It's not the political leaders fault, We vote them in, it's our fault
@gstrathmore194
@gstrathmore194 Ай бұрын
💯
@lovesallanimals9948
@lovesallanimals9948 Ай бұрын
​@@user-kh7tg8my4n💙💙💙
@lovesallanimals9948
@lovesallanimals9948 Ай бұрын
You know what trump wants to do😢😢
@user-kh7tg8my4n
@user-kh7tg8my4n Ай бұрын
​@@lovesallanimals9948 Have zero wars?
@laurarose7770
@laurarose7770 Ай бұрын
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 Ай бұрын
Yes they need a break.
@Blitches-SLXM
@Blitches-SLXM Ай бұрын
u can see in the parents eyes they are stretched THIN and burnt out smh
@8vI
@8vI Ай бұрын
Unfortunately, sometimes there are no breaks.
@Alexandra-ng1ih
@Alexandra-ng1ih Ай бұрын
this is why natural selection exists.. this isn’t right
@lacymcknight5043
@lacymcknight5043 Ай бұрын
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.
@Anita667788
@Anita667788 Ай бұрын
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.
@starswan
@starswan 27 күн бұрын
@@Anita667788no one should have to care for a full grown adult 24/7. He belongs in an institution. Be real. People like him aren’t compatible with life
@JourneytoGao
@JourneytoGao Ай бұрын
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.
@frog1204
@frog1204 Ай бұрын
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 Ай бұрын
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 Ай бұрын
​@@adriannamatos865soooo much truth in this, I totally identify with you for real 💕🫶
@mollz3704
@mollz3704 Ай бұрын
I wouldn't want a child like this. Flat out. People will judge but I think it's important to be honest with oneself.
@prinzezze
@prinzezze Ай бұрын
@@mollz3704I wouldn’t either. I have to turn down the sound for this video. Which you can’t do in real life.
@SassyXR6007
@SassyXR6007 Ай бұрын
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.
@YungNic
@YungNic 13 күн бұрын
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 🙏
@NoircatMask
@NoircatMask Ай бұрын
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 Ай бұрын
It must be a challenge. Much love to you and yours.
@TeagueChrystie
@TeagueChrystie Ай бұрын
@Shopgirl1
@Shopgirl1 Ай бұрын
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 Ай бұрын
❤️❤️❤️
@sheablancotricia
@sheablancotricia Ай бұрын
@@Shopgirl1 As the Dad says, give yourself grace, Shopgirl1. You did the best you could with the information and resources you had...
@butterflygirl3359
@butterflygirl3359 Ай бұрын
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 Ай бұрын
Exactly 👍🏻
@JayJay32186
@JayJay32186 Ай бұрын
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 Ай бұрын
@@JayJay32186 good job 👏🏻👏🏻👏🏻👏🏻👍🏻👍🏻👍🏻🤗
@jacobus57
@jacobus57 Ай бұрын
We see a VERY carefully curated infinitesimal slice of their lives. It's impossible to believe it's like this all the time.
@tangogent
@tangogent Ай бұрын
@@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.
@mrsweaver100
@mrsweaver100 Ай бұрын
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 29 күн бұрын
This whole family needs a 2 week vacation away from Jonathan to reconnect to themselves outside of being caretakers.
@godforlife21
@godforlife21 28 күн бұрын
Everyone is not comfortable being recorded or speaking in front of others.
@laylahahmad6468
@laylahahmad6468 28 күн бұрын
@@Lemons19902010they need 2 weeks vacation every couple of months for the rest of their lives
@nataliekirhen42
@nataliekirhen42 Ай бұрын
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 Ай бұрын
Hey, however amazing I believe Chris to be, it was the parents who created the space of acceptance, respect and love.
@nataliekirhen42
@nataliekirhen42 Ай бұрын
@@tangogent that is a lovely point and well taken- thank you!
@ascs4944
@ascs4944 Ай бұрын
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 Ай бұрын
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 Ай бұрын
Amen ​@@ericaroundtree457
@ummtotos9385
@ummtotos9385 Ай бұрын
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 Ай бұрын
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 Ай бұрын
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.
@AbraMacabreXx
@AbraMacabreXx Ай бұрын
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.
@Butwhodid79338
@Butwhodid79338 Ай бұрын
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 Ай бұрын
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 29 күн бұрын
​@@tangogentThese kids need a life, not praise
@pippareid1894
@pippareid1894 Ай бұрын
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.
@imdoneplus
@imdoneplus 26 күн бұрын
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.
@reneefayant-lueck5112
@reneefayant-lueck5112 Ай бұрын
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 Ай бұрын
​@@shelzmikeNo in vitro testing available?
@robertwilliams5618
@robertwilliams5618 Ай бұрын
Where's the cancer alley?
@JourneytoGao
@JourneytoGao Ай бұрын
1 in 1,000 having a birth defect that affects 1 in 100,000 is crying for action.
@malinia.20
@malinia.20 Ай бұрын
@@shelzmike Finally someone who gets it!
@letshaveacuppa_official
@letshaveacuppa_official Ай бұрын
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.
@dk237
@dk237 Ай бұрын
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.
@melissag680
@melissag680 Ай бұрын
Great job, family. The message from Dad to dads brought tears to my eyes. Very kind, loving, vulnerable, true sentiments. Thank you for sharing your family with us.
@sandrarenner4402
@sandrarenner4402 Ай бұрын
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 Ай бұрын
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 Ай бұрын
I pray for a person to come into Jonathan's life who knows Jesus well and would be able to heal him physically, spiritually and mentally. I pray that he would be able to find a way to develop a personal, close relationship with Him and that he will one day be able to use this time in his life as a testimony to others of God's healing and grace. He is the great physician, after all. I pray for strength for both parents, and that Jesus would reveal himself to them so they may be able to lean on Him and see exactly how His love can change the entire family. I pray that the entire family would be able to testify to God's grace one day. No weapon formed against them shall prosper, in Jesus name.✝️ We thank you for Jonathan's life, God and we know that you have a plan and purpose for him. I pray that You would reveal that to Him, in Your timing. In Jesus' name, Amen.
@ResurrectedinTruth
@ResurrectedinTruth Ай бұрын
him*
@HabitualJoker
@HabitualJoker Ай бұрын
When the parents aren’t around, it’s going to be on the other kids to take care of him.
@catrice1296
@catrice1296 Ай бұрын
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.
@Eddie-vy2zm
@Eddie-vy2zm Ай бұрын
Mad props to Mom and Dad from a Dad. You are truly a light to what parents should be
@courtney9212
@courtney9212 Ай бұрын
Amen 💯
@CuriousMindCenter
@CuriousMindCenter Ай бұрын
The dad is so humble, I'm so touched and his language brings up tears in my eyes. Best wishes for Jonathan and the family.
@gartrek28
@gartrek28 Ай бұрын
Mom definitely needs and DESERVES at least a week of pampering. 🥰
@julievanderleest
@julievanderleest Ай бұрын
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 Ай бұрын
@@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 Ай бұрын
@@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 Ай бұрын
I'd say them both. ❤
@paulx7620
@paulx7620 Ай бұрын
​@@islandgirl7519absolutely so glad someone else sees this.
@bluestarr2009
@bluestarr2009 Ай бұрын
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 Ай бұрын
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 Ай бұрын
When I heard that it broke my heart.
@bienemaja2876
@bienemaja2876 Ай бұрын
The policemen who came to the beach could have done a better job: tell the ladies to mind their own business!
@katlyndobransky2419
@katlyndobransky2419 Ай бұрын
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 Ай бұрын
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 💔
@Ilovepeets
@Ilovepeets Ай бұрын
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. ❤
@danielheld6111
@danielheld6111 Ай бұрын
As a father of a special needs child, this dad made me cry and scream hallelujah with that speech at the end!
@maxinepreston7601
@maxinepreston7601 Ай бұрын
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.
@harathecynic3397
@harathecynic3397 Ай бұрын
So much love! blessed people
@dianagumas3777
@dianagumas3777 Ай бұрын
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 Ай бұрын
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 24 күн бұрын
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.
@bruhmoment3306
@bruhmoment3306 Ай бұрын
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 Ай бұрын
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 Ай бұрын
Well said
@operababe0588
@operababe0588 Ай бұрын
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 Ай бұрын
Exactly! Finally a sane person in this comment section
@cindypowell6358
@cindypowell6358 Ай бұрын
Beautifully & very well said. I couldn’t agree with you more. 🙏❤️🙏
@joshuawayneyork
@joshuawayneyork Ай бұрын
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 .
@celes42017
@celes42017 Ай бұрын
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 Ай бұрын
His brother is a fantastic younger brother.
@amandamadyara5635
@amandamadyara5635 Ай бұрын
😂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 Ай бұрын
Could his many tragic disabilities not have been detected in vitro? Prenatal?
@SwissMissss
@SwissMissss Ай бұрын
If they were, what would they have been able to do about it?​@@chuckthebrindlepittie6820
@victoriajohnson4420
@victoriajohnson4420 Ай бұрын
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.
@carahowell4260
@carahowell4260 Ай бұрын
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 Ай бұрын
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 Ай бұрын
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.
@kacisullivan9003
@kacisullivan9003 Ай бұрын
Jonathan, you are amazing! You are loved by your family, and your joy is valid! The way you show up in the world is valuable! All families deserve more support. This family especially. I'm in a similar situation and i send my love and solidarity ❤️
@yonakana1247
@yonakana1247 Ай бұрын
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 Ай бұрын
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 Ай бұрын
​@@NotaravisenUndetectable in vitro? No prenatal/in vitro diagnosis?
@ak47alice
@ak47alice Ай бұрын
Just go to India
@victoriajohnson4420
@victoriajohnson4420 Ай бұрын
@@chuckthebrindlepittie6820 DiGeorge Syndrome is definitely detectable prenatally.
@scillavanilla5356
@scillavanilla5356 Ай бұрын
These are the people who would complain about having a child like that out in public “making a scene”
@t-tokyo9107
@t-tokyo9107 Ай бұрын
Dad's honesty and rawness is so touching; so often, we get to hear about mom's experience.
@danielleedmonds3832
@danielleedmonds3832 20 күн бұрын
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!
@celiabonadies5667
@celiabonadies5667 Ай бұрын
The noise level would be unbearable for me. I hope these parents get respite care.
@a.j.marcantonio153
@a.j.marcantonio153 Ай бұрын
Same here, I didn’t end up watching the entire video because Jonathan’s noises were too loud for me to handle.
@robertwilliams5618
@robertwilliams5618 Ай бұрын
​@@a.j.marcantonio153yea hurt my ears
@aliciakillen1940
@aliciakillen1940 Ай бұрын
Yeah. Same
@MaynardsSpaceship
@MaynardsSpaceship Ай бұрын
He was also overstimulated.
@Deadpool4president
@Deadpool4president Ай бұрын
I put it on mute and read the subtitles
@scarygirlBeeMe
@scarygirlBeeMe Ай бұрын
I feel empathy for his siblings.
@jonnylumberjack6223
@jonnylumberjack6223 Ай бұрын
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.
@starswan
@starswan 27 күн бұрын
@@scarygirlBeeMe right. No one deserves to have a sibling like that
@ripleymt
@ripleymt Ай бұрын
The anxiety is so high in these parents, and my heart goes out to them 🙏🏼🙏🏼 I help take care of my mom who is in mid-stages of dementia, and that’s difficult physically and mentally, even though I love and appreciate every single day I have with her, so I can’t imagine what they’re going through. We’ve only had these issues for 5 years. They must be exhausted.
@cindysemblante4411
@cindysemblante4411 Ай бұрын
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 Ай бұрын
Yeah the brother seems very loving towards him and I couldn't imagine my dad being that patient and kind lol
@ToriOfTheNile
@ToriOfTheNile Ай бұрын
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 😢
@happysmileylips
@happysmileylips 25 күн бұрын
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!
@beckys7884
@beckys7884 Ай бұрын
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 Ай бұрын
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 Ай бұрын
I agree. The kids look extremely depressed … I can’t imagine what they must feel. Even brother said he was resentful. :(
@angie4800
@angie4800 Ай бұрын
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 Ай бұрын
@@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 Ай бұрын
@@angie4800I would think they were probably hopeful they would have children that were “normal”.
@taopaul1443
@taopaul1443 Ай бұрын
17:02 As a dad, deeply thank you for your support and wish you can get support and help as well.
@Ishsu-777
@Ishsu-777 Ай бұрын
What a beautiful family and video ! Thank you for giving these families a place to share.
@lovevelvetbones7507
@lovevelvetbones7507 Ай бұрын
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!
@dilemma6571
@dilemma6571 Ай бұрын
As a special needs teacher, I have total admiration for this family. ❤ I feel that they could all do wirh 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 wirh Jonathan. I wish them all well - what a beautiful family. Xxx
@MrsRachelleTX
@MrsRachelleTX Ай бұрын
I agree, they are a Beautiful family! I hope they get some respite too. 🙏
@timanderson9466
@timanderson9466 Ай бұрын
There is an unbelievable amount of stress in that home, I can see it in all their eyes. As much as they love him, they're in over their heads.
@phychicmusic
@phychicmusic Ай бұрын
Let them be the one's to decide that not a stranger! My father raised my brother Same shape until he died at 78! My dad was awesome!!!!!!
@timanderson9466
@timanderson9466 Ай бұрын
@@phychicmusic Settle down. My post was an observation. These people are not your father, the dynamic is totally different.
@Alexandra-dy2ns
@Alexandra-dy2ns Ай бұрын
@@phychicmusic There's nothing wrong with voicing one's opinion. If you can't deal with it, you'd better not read the comments.
@therealjd1503
@therealjd1503 Ай бұрын
Who wouldn’t be.
@lindak3030
@lindak3030 Ай бұрын
@@phychicmusic Almost no one is capable of assessing their own level of trauma or stress. People are universally bad at that. Children, particularly, have no frame of reference.
@lovingmayberry307
@lovingmayberry307 Ай бұрын
What an amazing, inspiring family! I have issues with certain noises, so being around Johnathan would be extremely difficult for me. I applaud the patience of these parents, and they have passed that skill on to their children. 👍❤😊
@oliviaward6454
@oliviaward6454 Ай бұрын
Well said and agreed!
@UpFromUnder6
@UpFromUnder6 Ай бұрын
I don’t believe the siblings have a choice. 😢
@ameliesayshola8854
@ameliesayshola8854 Ай бұрын
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 Ай бұрын
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 29 күн бұрын
@@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 29 күн бұрын
@@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 28 күн бұрын
There are government programs for him if family chooses to go with that route
@GetDat1
@GetDat1 Ай бұрын
Those parents need respite and those siblings are lucky to go to school just to get a break.
@UpFromUnder6
@UpFromUnder6 Ай бұрын
👍🏼 Absolutely!!
@HappyT111
@HappyT111 Ай бұрын
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 ❤
@MaxItUpwithMarta
@MaxItUpwithMarta Ай бұрын
I have never been so moved listening to the family members of your guests as I have today. That dad is so special.
@HazHut
@HazHut Ай бұрын
I love you, SBSK 💜 Prayers and gratitude all round 🙏
@vlastabarac
@vlastabarac Ай бұрын
This is so hard😢 i am so sorry for other kids. They deserve so much good in life
@alijane6675
@alijane6675 Ай бұрын
Jonathan has such understanding, patient siblings. The older two display a maturity and grace beyond their years, and it seems the baby sister will as well. I don’t think we acknowledge siblings of people with profound disabilities enough. The sacrifices brothers and sisters make for that sibling, though necessary, must be incredibly difficult nonetheless. Just wanted to let them know they are seen. 🙂
@amberj.891
@amberj.891 Ай бұрын
❤❤❤
@autumndavis7605
@autumndavis7605 Ай бұрын
Agreed !!
@bad_boy8269
@bad_boy8269 26 күн бұрын
Closing statement hit me. Great video. Thank you for sharing this and creating positive awareness.
@Stewalebeth
@Stewalebeth Ай бұрын
“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.
@indesomniac
@indesomniac Ай бұрын
I hope their family is able to get more support from nurses or carers in the future. It must have been hard for their other kids to need to step up into that role, and as they grow up and develop their own lives, mom and dad are going to need more help. It’s upsetting that so many lives are impacted by “environmental factors” that are the result of human greed and lack of care for others, and that those impacted are left without support from the companies that harmed them.
@dianehess5520
@dianehess5520 Ай бұрын
My exact thoughts.
@9sheri9
@9sheri9 Ай бұрын
Agreed 💯
@lisamac8503
@lisamac8503 Ай бұрын
All of us contribute to the issues with environmental factors Big Ag is one Watch people come unglued when you mention the word vegan ---We can not all blame companies Its a cop out WE are ALL at fault WE demand products that are killing our earth and most refuse people refuse to change The change is us
@DoublingJourneyers
@DoublingJourneyers 28 күн бұрын
Extremely humbling video
@Jitmommy33
@Jitmommy33 Ай бұрын
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.
@carenfeldman8854
@carenfeldman8854 Ай бұрын
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 Ай бұрын
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 Ай бұрын
"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 Ай бұрын
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 Ай бұрын
​@ascs4944 you have no clue what your talking about
@milesp2295
@milesp2295 Ай бұрын
​@@Deadpool4presidentdefine hero ..karen
@avasbaba
@avasbaba Ай бұрын
That is one great dad. I hope the best for all of them.
@jay_godbold
@jay_godbold Ай бұрын
As an older sibling who has been pushed into the role of providing additional parental care, I can sympathize with Jonathan’s siblings. Taking care of able-bodied toddlers and babies can be overstimulating, stressful, and exhausting. I can’t imagine being as young as Jonathan’s siblings and having to care for someone with his level of disability. I hope the older children didn’t feel pressured to pass the responsibility onto their younger siblings when they eventually moved out. And I hope none of the children felt obligated to help with Jonathan if they didn’t truly want to.
@deiov
@deiov Ай бұрын
as another older sibling who has moved toward providing additional parental care, this makes it seem like Jonathan is merely a burden. I understand empathy and sympathy but I don't think it's done at the cost of dehumanizing someone else.
@thesilvershining
@thesilvershining Ай бұрын
@@deiovThis. Exactly.
@jay_godbold
@jay_godbold Ай бұрын
@@deiov I apologize I that is what my comment came off as. I of course believe disabled children and adults deserve the same amount of love and care as able-bodied and minded ones. But that doesn't change the innate truth that caring for a disabled person can be a lot more stressful and taxing than caring for the latter. I was merely just trying to empathize with Johnathans siblings and bring light to the common familial problem of burddening siblinings with the care of babies or in this case a disabled older sibling.
@deiov
@deiov Ай бұрын
@@jay_godbold Don't feel the need to apologize! Your sentiments were expressed quite well, it's just in this notion of burdenning. I think no matter what, having anyone in your life, especially people strugging with a disease or injury will cause more responsbility. Instead, I believe society as a whole should support this family,. Johnathan and the siblings rather than being oh well... Especially in the comments (not yours), it's just more pity than empathy. Where the concern is distant (oh i could never do that....)
@jasonm456
@jasonm456 27 күн бұрын
Thank you so much for making this video, and the hundreds of others. It's so important to bring awareness to the real life situations many families face with special needs kids, from mild to the most severe. Every kid and every family behind them deserves to be heard and understood and receive grace and compassion. I have a son with mild-moderate autism and he has his fair share of challenges, and on the one hand I see families like Jonathan's and remember how "easy" my situation can be relative to others, and on the other hand I can feel a bond of compassion with his family, because we all love our kids 100% and will do anything to support them no matter what, but sometimes it just feels like an unbearable crushing weight. Hearing his dad speak directly to other dads (me) really hit hard with me. We're all in this together. Connecting with others is the only way to make it, and you are doing so much to help make that happen.
@pollyannaprinciple5860
@pollyannaprinciple5860 Ай бұрын
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 Ай бұрын
How o. Earth did that happen? No prenatal or in vitro testing available? Genetic counseling?
@malinia.20
@malinia.20 Ай бұрын
​@@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 29 күн бұрын
@@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.
@erinwright3351
@erinwright3351 Ай бұрын
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.
@TS-yf2zf
@TS-yf2zf 27 күн бұрын
"Everyone you meet is fighting a battle you know nothing about. Be kind always". Robin Williams
@Junior_Berdtt
@Junior_Berdtt Ай бұрын
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 Ай бұрын
When Dad was talking about dx he looked like he was gonna cry at one point
@Junior_Berdtt
@Junior_Berdtt Ай бұрын
@@Angel-rq3pi exactly
@deiov
@deiov Ай бұрын
i honestly find it more sad when people have pity, pity is treated like dirt. it's very different from empathy.
@belantww
@belantww Ай бұрын
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 Ай бұрын
It was struggle for me to watch all the way as well.
@lxdiaa
@lxdiaa Ай бұрын
@@lisalynnmarie2448yeah…
@JohnSmith-bk6ec
@JohnSmith-bk6ec Ай бұрын
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 Ай бұрын
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 Ай бұрын
​@@adriannamatos865 It's not up to you to say what these parents should or shouldn't do.
@isabelgonzalez5500
@isabelgonzalez5500 27 күн бұрын
This is a lovely family. This interview is very inspiring. You can tell Jonathan is loved
@azzaakos1284
@azzaakos1284 Ай бұрын
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 Ай бұрын
Even with all the available siblings maybe hiring someone to help (if affordable) might have been a good idea .
@Soprano1638
@Soprano1638 Ай бұрын
No, not really. Sometimes you don't get those feelings because that's your family, that's your sibling ❤
@4lmighty_L0af
@4lmighty_L0af Ай бұрын
@@Soprano1638 definitely not. it sucks and is exhausting and you will get mentally ill
@Magratka
@Magratka Ай бұрын
@@Soprano1638 words "family" and "sibling" are not a magic remedy for mental health struggle.
@Soprano1638
@Soprano1638 Ай бұрын
​@@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.
@TeacherPositive
@TeacherPositive Ай бұрын
I love how this family speaks the truth about how they are feeling. I can sense that it’s really hard for them, but they are doing their best.
@juliemcdonough7673
@juliemcdonough7673 Ай бұрын
I have twins who are 22 but developmentally are around 2. We have an older son who is 26. I loved that this video told so much of the kids view of things. It really helps me understand how my son must feel. This is a real look into how families like ours function. I loved the end where he was speaking to the dads. I feel like they don’t get enough attention. My husband would do anything for our kids and I’m thankful. This will be a family I think of from now on. Thank you for sharing.
@yourneopetisstarving
@yourneopetisstarving Ай бұрын
I know a lot of people are (very fairly) sympathising with the parents and siblings, their stress and tiredness, but I would just like to point out that I love the way they all look to and talk about Johnathan with a lot of love. There are evident struggles and pain, but I can see that Johnathan brings them a lot of joy and happiness, too. Although there is distress and fatigue, I'm sure that he has impacted their lives in many positive ways that we can't see in this short interview.
@4MixMasterMonkey
@4MixMasterMonkey Ай бұрын
This family is so wonderful. But this must be so exhausting to handle every minute of their lives. Sending lots of love from Brooklyn, NY 💙
@sarakyoutube
@sarakyoutube 26 күн бұрын
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.
@gardengal87
@gardengal87 Ай бұрын
Bless this family. That would be very hard to live with that loud bleating all day.
@elisabethastrom4598
@elisabethastrom4598 Ай бұрын
What a sweet, sweet man Jonathans dad is! And his whole family is beautiful. ❤
@kardonay
@kardonay 27 күн бұрын
Sounds like Dad has really grown through this. Good for you Dad. Good for you. Best of luck, mate
@mooncakerabbithender7203
@mooncakerabbithender7203 Ай бұрын
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.
@ARTWV
@ARTWV Ай бұрын
I can’t imagine how hard life can be but I wish them happiness in life.
@Djrob515
@Djrob515 Ай бұрын
I honestly couldn’t do it. Props to Them for roughing it out
@ARTWV
@ARTWV Ай бұрын
@@Djrob515 I would think if he were your child you could do it.
@Djrob515
@Djrob515 Ай бұрын
@@ARTWV who knows I’m not sure I would want to
@ARTWV
@ARTWV Ай бұрын
@@Djrob515 do you have kids respectfully?
@wreckmore
@wreckmore Ай бұрын
Listen, guys. I know this is hard to watch, but there's something to be said for these siblings being able to describe the tough sides of having siblings with extensive needs. It means that there is openness and honestly in this home. Of course it's hard for both the parents and the siblings, but for a lot of people life really is very, very hard. If there is anything to take away from this video it's not "_I'm_ uncomfortable" - it is "how can I help".
@Picuasco
@Picuasco Ай бұрын
I totally agree with you, well said!! 🙂
@chellycat14
@chellycat14 Ай бұрын
I can feel the parents' exhaustion. :( And I thought I had problems. This makes all my problems feel like they are nothing, compared to what this family going through.
@MrsRachelleTX
@MrsRachelleTX Ай бұрын
After watching this interview, I felt the exact same thing…and regretted being so annoyed with my 6 year old this morning.
@evanoeevanoe810
@evanoeevanoe810 Ай бұрын
Amazing people, a truly loving mum and dad. God bless U and your wonderful family!
@Maria-sj7dz
@Maria-sj7dz Ай бұрын
I’m sorry but i only can see an exhausted and sad family, please somebody who can help them…
@marcusphoenixish
@marcusphoenixish 24 күн бұрын
I see the same and have seen this in real life. One sibling with needs overshadows the other kids while exhausted parents try to cope while doing their best. They just need a break without the burden parents and siblings are exhausted
@rhondaphillips1479
@rhondaphillips1479 Ай бұрын
Ohhhh my gosh !!!....Jonathan seems like a lot of work ! I hope this family gets outside support. God Bless this family !
@Dymphna06
@Dymphna06 26 күн бұрын
This family is doing their best. They are very patient and loving. It’s good to see the honesty from the kids. It’s real. The isolation is real and the exhaustion is real. They are real. This is their life and I have massive respect for them. ❤❤❤❤❤
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