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 :).
****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.
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
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.
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.
"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.
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.
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.
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!!
@@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.
@@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 .
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.
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 🙏
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. ❤
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.
@@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?
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.
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%
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
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.❤
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.
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.
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.
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.
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
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
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.
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.
I had a ex-girlfriend that did the same exact thing. Hers was a nice big home in a more spaced out environment, it had a spacious gap between houses with trees & greenery in, the yard was pretty big with a little playground in it too. It can be a tough job though, my ex would get hit often from some of the older kids, physical outbursts were a pretty regular occurrence. I thought it was pretty cool to see that kind of thing existed
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.
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.
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 🙏
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.
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.
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.
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.😢🙏
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.
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.
@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.
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 .
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.
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
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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
Почти все патологии из за отравления тяжёлыми металлами и их соединениями, и часто эти отравления носят криминальный характер. Очень жаль, я вас понимаю❤.
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.
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.
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.
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!
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
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 💔
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 .
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.
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.
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.
@@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.
@@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.
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!
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’.
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.
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.
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.
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
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.
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.
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.
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.
@@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
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. ❤
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.
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.
@@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.
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.
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.
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.
"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
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.
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!
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.
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.
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.
@@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.)
@@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!
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.
“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.
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 😢
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.
Mom said so little and I think she was hiding a lot of her pain. I worked with children and adults like this in my early career and there are the joyful, outgoing, loving disabled souls and then sadly there are these who seem very tormented and it's still very hard for me to watch. My heart goes out to all of them. 💕
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
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!
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 ❤
Such lovely people. The dad made me cry at the end. Even in the middle of such an unplanned life, 18 years of every single minute with Jonathan vocalizing, the martiage is intact. The siblings have some resentment but are honest rather thsn feeling they need to hide it. I don't think I've seen another episode with such palpable exhaustion and mid level sadness, though.
My goodness, would it be such a bad thing for Jonathan to stay in a special home? This is taking such a big toll on the whole family. I don't think that anyone is getting better in this situation.
Not all care facilities will take people who may be considered to be harmful to themselves or others, and also, you’re assuming there’s a facility that’s qualified to take him in their vicinity in general. In my state (OK), some people have waited +/- 15 years for home disability services. We need to do better as a country for people like this.
I’m sure that has to be the plan eventually. When the parents get older and he’s a grown man he will be harder to handle physically for them. I wish them nothing but the best they are good people.
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.
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.
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.
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.
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.
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!
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.
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
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.
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.
can I say something with out people jumping on me... super nice family , I think that their son would be better off in an assistant living enviorment , no because of the daily life disturptions but there is so much hardship on the other children and the focus so much on the disabled child, that it is robbing the other kids of happiness, so the love cannot be equally given to each separate child, rather than solely focusing on him on a daily basis. I know its valiant what they are doing but, my God , how much can a family take of his issues with out becoming resentful or not socially acclimated to life. just my thoughts , the other kids deserve happiness. .
That may not be an option unfortunately. Not only is it difficult to find places that can accommodate someone with his level of disability, but it’s insanely expensive and they would likely not be able to afford it.
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. 👍❤😊
I get the feeling that Jonathan's subjective experience of life is very intense, like because of the differences in his anatomy, the way energy moves through his body and, specifically through the central nervous system, it feels much more intense than the usual, so he needs to move it out through the sounds and movements that he ends up doing all the time. Like his body is just not familliar with the state of relaxation that is required to simply be able to be still. In his case, it really seems impossible because there's just always too much energy in motion - what we could maybe call "chaotic" or non-linear motion. All the love and all the power to the whole family and to the whole of Humanity. ♡
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.
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.
@@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.
@@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....)
@@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.
God this is so so sad my heart could break for Johnathon and his family,they seem like wonderful people.I truly hope the get some help or respite care ,it must be so stressful living in this environment
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.
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
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.
Loving someone with intense special needs changes you, and your view of the world. I don’t have a child like this myself, but I love a family who does and I do some respite care for them when I can. The gift of pure love some of these kids can give is amazing and such beautiful thing to witness. The exhaustion and struggle for the support people/parents is never ending and if you can help a family like theirs, please do. Our whole world is better when we have folks like Johnathan in our community, and when we have parents like his raising their children around us all. ❤
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 :).
I'm sure he enjoyed playing with you and that's what matters! 💕
I'm sure he had fun playing the clapping game with you !!!
thanks man
Hi Chris love your videos I can be your videos please to meet with you ❤️❤️😘😘😎😎😎😘😘❤️❤️❤️❤️❤️
You have such a loving soul I am sure you would never leave someone out
You can really see how tired they all are in their eyes, they need more support.
agreed
****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.
Yeah poor family
@@DissapointedInYou what are you getting at?
@@DissapointedInYou can u explain pls
Mom seems so tired 😢
Dad is doing his best emotionally to hang in there.
Seems like alot of love ❤️
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
I was thinking the same, she does looks so tired bless her
I wonder: she is probably the one that spends most of the time with him. Hence, the tired demeanor.
I saw sadness
País fazendo.o.melhor por seus filhos. Deus os abençoe e fortaleça cada dia mais❤❤
"Everyone you meet is fighting a battle you know nothing about.
Be kind always".
Robin Williams
The quote is misattributed to Robin Williams but it's a lovely one ❤️
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.
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.
More like an angel, right?
Definitely an earth angel 🎉❤😊@@Jose-Gonzalez-cfl
Amazing father ❤
I was just thinking this too! 👏🙏
An absolute warrior.
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.
Yes 💯
"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.
Beautiful said, thank you! 🙏🕊️
I agree with you completely. Although I don't know if I would want to exist if that was my life like Johnathan.
💓💓
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.
I could not agree more
I feel the same way about almost all videos on this channel
Your comment echoes my sentiments. Saddest case I've ever seen. The parents look as though they are barely hanging in there 😢
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.
I kept thinking: 18. I’m guessing He aged out of a lot of help.
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!!
@@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:(
@@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.
@@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 .
@@Katherine_critters Take it easy… I wonder the same..
What a blessing your father is!
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.
It's not the political leaders fault, We vote them in, it's our fault
💯
@@user-kh7tg8my4n💙💙💙
You know what trump wants to do😢😢
@@lovesallanimals9948 Have zero wars?
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 🙏
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. ❤
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.
@@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?
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.
N en frencais
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%
Im sorry. It can be rough. Love to you and your son.
You are strong, Miss Melissa! Keep going
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
Me too. This reminded me of my son.
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.❤
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.
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.
I totally agree.
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.
@@cesia9954 what a gift to find your comment, too
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.
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
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
Yes they need a break.
u can see in the parents eyes they are stretched THIN and burnt out smh
Unfortunately, sometimes there are no breaks.
this is why natural selection exists.. this isn’t right
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.
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.
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.
I had a ex-girlfriend that did the same exact thing. Hers was a nice big home in a more spaced out environment, it had a spacious gap between houses with trees & greenery in, the yard was pretty big with a little playground in it too. It can be a tough job though, my ex would get hit often from some of the older kids, physical outbursts were a pretty regular occurrence. I thought it was pretty cool to see that kind of thing existed
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.
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.
That dads speech at the end was him trying to encourage himself to keep going... there clearly at there breaking point.
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 🙏
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.
@@adriannamatos865soooo much truth in this, I totally identify with you for real 💕🫶
I wouldn't want a child like this. Flat out. People will judge but I think it's important to be honest with oneself.
@@mollz3704I wouldn’t either. I have to turn down the sound for this video. Which you can’t do in real life.
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.
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.
Exactly 👍🏻
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.
@@JayJay32186 good job 👏🏻👏🏻👏🏻👏🏻👍🏻👍🏻👍🏻🤗
@@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.
@@JayJay32186
This is the first comment that I actually really enjoyed.
You've got the right stuff
💪🏻🫂🌞🙏🏼
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.😢🙏
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.
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.
@Loveandlightforallblah
@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.
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 .
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.
It must be a challenge. Much love to you and yours.
❤
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
❤️❤️❤️
@@Shopgirl1 As the Dad says, give yourself grace, Shopgirl1. You did the best you could with the information and resources you had...
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.
Hey, however amazing I believe Chris to be, it was the parents who created the space of acceptance, respect and love.
@@tangogent that is a lovely point and well taken- thank you!
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!
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.
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.
Amen @@ericaroundtree457
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.
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.
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.
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.
Clearly, the parents have created an environment of respect and love for each member of their diverse family. They are to be praised!
@@tangogentThese kids need a life, not praise
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.
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.
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
@@shelzmikeNo in vitro testing available?
Where's the cancer alley?
1 in 1,000 having a birth defect that affects 1 in 100,000 is crying for action.
@@shelzmike Finally someone who gets it!
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.
Extremely humbling video
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
Someone should get life sentence for that.
Почти все патологии из за отравления тяжёлыми металлами и их соединениями, и часто эти отравления носят криминальный характер. Очень жаль, я вас понимаю❤.
Where was this?! Omg I'm so sorry
Could you be able to sue? Were you informed about contamination before purchase?
You should talk to a lawyer. That sounds like someone should be liable. I’m sorry it must be so stressful and painful. ❤
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.
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...
they really don't look happy..
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.
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
One of them is going to snap one day 😔
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.
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!
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
When I heard that it broke my heart.
The policemen who came to the beach could have done a better job: tell the ladies to mind their own business!
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
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 💔
you can see the stress written on the mother's face
As a father of a special needs child, this dad made me cry and scream hallelujah with that speech at the end!
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 .
This is why I love watching these interviews. It teaches me and more importantly it humbles me. Thank you for sharing your experience too. ♥️
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.
Oh my lord, I can’t even imagine having this as reality every single day. You both are so strong.
How tough this must be on the whole family on a daily basis. The parents look exhausted
This is really hard to watch 😢
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.
him*
When the parents aren’t around, it’s going to be on the other kids to take care of him.
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.
@@HabitualJoker That's not right. The parents need to put a plan in place so that doesn't happen.
Mad props to Mom and Dad from a Dad. You are truly a light to what parents should be
Amen 💯
I dont wish this on absolutely anyone
Mom definitely needs and DESERVES at least a week of pampering. 🥰
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.
@@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.
@@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.
I'd say them both. ❤
@@islandgirl7519absolutely so glad someone else sees this.
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!
Olha,br por aqui
It's to be expected when you share your life with the public
Amen beautiful grace help this family amen
Existe algum medicamento para que ele fique menos estressado?
Brasil aqui também.
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’.
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.
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.
@@NotaravisenUndetectable in vitro? No prenatal/in vitro diagnosis?
Just go to India
@@chuckthebrindlepittie6820 DiGeorge Syndrome is definitely detectable prenatally.
These are the people who would complain about having a child like that out in public “making a scene”
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.
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
Well said
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.
Exactly! Finally a sane person in this comment section
Beautifully & very well said. I couldn’t agree with you more. 🙏❤️🙏
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
THIS ❤
My sentiments exactly! 👏💙
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.
His brother is a fantastic younger brother.
😂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
Could his many tragic disabilities not have been detected in vitro? Prenatal?
If they were, what would they have been able to do about it?@@chuckthebrindlepittie6820
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.
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.
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.
I agree. The kids look extremely depressed … I can’t imagine what they must feel. Even brother said he was resentful. :(
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.
@@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
@@angie4800I would think they were probably hopeful they would have children that were “normal”.
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. ❤
The constant noises he makes would drive me insane i would have to put him in a care home
Dad's honesty and rawness is so touching; so often, we get to hear about mom's experience.
I feel empathy for his siblings.
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.
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
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.
Even with all the available siblings maybe hiring someone to help (if affordable) might have been a good idea .
No, not really. Sometimes you don't get those feelings because that's your family, that's your sibling ❤
@@Soprano1638 definitely not. it sucks and is exhausting and you will get mentally ill
@@Soprano1638 words "family" and "sibling" are not a magic remedy for mental health struggle.
@@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.
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.
My God, I am literally crying my eyes out. Please get these parents help. They are beyond exhausted……and extraordinary.
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.
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.
"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
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.
@ascs4944 you have no clue what your talking about
@@Deadpool4presidentdefine hero ..karen
The noise level would be unbearable for me. I hope these parents get respite care.
Same here, I didn’t end up watching the entire video because Jonathan’s noises were too loud for me to handle.
@@a.j.marcantonio153yea hurt my ears
Yeah. Same
He was also overstimulated.
I put it on mute and read the subtitles
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!
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.
This whole family needs a 2 week vacation away from Jonathan to reconnect to themselves outside of being caretakers.
Everyone is not comfortable being recorded or speaking in front of others.
@@Lemons19902010they need 2 weeks vacation every couple of months for the rest of their lives
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.
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.
@@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.)
@@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!
There are government programs for him if family chooses to go with that route
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.
And now I am reminded that I have nothing to complain about
“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.
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 😢
This is absolutely heart breaking.
I have never been so moved listening to the family members of your guests as I have today. That dad is so special.
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.
Mom said so little and I think she was hiding a lot of her pain. I worked with children and adults like this in my early career and there are the joyful, outgoing, loving disabled souls and then sadly there are these who seem very tormented and it's still very hard for me to watch. My heart goes out to all of them. 💕
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
Yeah the brother seems very loving towards him and I couldn't imagine my dad being that patient and kind lol
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!
Sounds like Dad has really grown through this. Good for you Dad. Good for you. Best of luck, mate
Those parents are far better humans than I ever will be. Huge props to them for doing this interview.
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 ❤
Such lovely people. The dad made me cry at the end. Even in the middle of such an unplanned life, 18 years of every single minute with Jonathan vocalizing, the martiage is intact. The siblings have some resentment but are honest rather thsn feeling they need to hide it. I don't think I've seen another episode with such palpable exhaustion and mid level sadness, though.
My goodness, would it be such a bad thing for Jonathan to stay in a special home? This is taking such a big toll on the whole family. I don't think that anyone is getting better in this situation.
I agree. They can spend alot of time with him daily visiting a special home and still have a separate home with their other kids.
Not all care facilities will take people who may be considered to be harmful to themselves or others, and also, you’re assuming there’s a facility that’s qualified to take him in their vicinity in general. In my state (OK), some people have waited +/- 15 years for home disability services. We need to do better as a country for people like this.
I’m sure that has to be the plan eventually. When the parents get older and he’s a grown man he will be harder to handle physically for them. I wish them nothing but the best they are good people.
They all look miserable
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.
It was struggle for me to watch all the way as well.
@@lisalynnmarie2448yeah…
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.
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.
@@adriannamatos865 It's not up to you to say what these parents should or shouldn't do.
That dad makes me want to cry. I want to give him a big hug. Dont give up Dad. You are outstanding
He certainly has all my respect. Have no idea how he does it.
He's sacrificing his other children and wife just to be with Jonathan 24/7....
@@OhHeckNono yeah...his life is very difficult.
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.
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.
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.
That is one great dad. I hope the best for all of them.
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!
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.
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
I agree, they are a Beautiful family! I hope they get some respite too. 🙏
Dad is just simply amazing. Wow. Bless this family, thank you guys for sharing ❤
This is so hard😢 i am so sorry for other kids. They deserve so much good in life
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.
I was going to disregard the environmental factors until i heard he was in gestation while in India.
How sad to have to live with this. It must be very tiring, you can see how exhausted they are on the parents' faces 😢
When Dad was talking about dx he looked like he was gonna cry at one point
@@Angel-rq3pi exactly
i honestly find it more sad when people have pity, pity is treated like dirt. it's very different from empathy.
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.
can I say something with out people jumping on me... super nice family , I think that their son would be better off in an assistant living enviorment , no because of the daily life disturptions but there is so much hardship on the other children and the focus so much on the disabled child, that it is robbing the other kids of happiness, so the love cannot be equally given to each separate child, rather than solely focusing on him on a daily basis. I know its valiant what they are doing but, my God , how much can a family take of his issues with out becoming resentful or not socially acclimated to life. just my thoughts , the other kids deserve happiness. .
That may not be an option unfortunately. Not only is it difficult to find places that can accommodate someone with his level of disability, but it’s insanely expensive and they would likely not be able to afford it.
I can’t imagine how hard life can be but I wish them happiness in life.
I honestly couldn’t do it. Props to Them for roughing it out
@@Djrob515 I would think if he were your child you could do it.
@@ARTWV who knows I’m not sure I would want to
@@Djrob515 do you have kids respectfully?
but please also imagine how hard it is to be him. please imagine that too.
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. 👍❤😊
Well said and agreed!
I don’t believe the siblings have a choice. 😢
I get the feeling that Jonathan's subjective experience of life is very intense, like because of the differences in his anatomy, the way energy moves through his body and, specifically through the central nervous system, it feels much more intense than the usual, so he needs to move it out through the sounds and movements that he ends up doing all the time. Like his body is just not familliar with the state of relaxation that is required to simply be able to be still. In his case, it really seems impossible because there's just always too much energy in motion - what we could maybe call "chaotic" or non-linear motion. All the love and all the power to the whole family and to the whole of Humanity. ♡
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.
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.
@@deiovThis. Exactly.
@@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.
@@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....)
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.
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!!!!!!
@@phychicmusic Settle down. My post was an observation. These people are not your father, the dynamic is totally different.
@@phychicmusic There's nothing wrong with voicing one's opinion. If you can't deal with it, you'd better not read the comments.
Who wouldn’t be.
@@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.
God this is so so sad my heart could break for Johnathon and his family,they seem like wonderful people.I truly hope the get some help or respite care ,it must be so stressful living in this environment
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.
My exact thoughts.
Agreed 💯
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
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.
Loving someone with intense special needs changes you, and your view of the world. I don’t have a child like this myself, but I love a family who does and I do some respite care for them when I can. The gift of pure love some of these kids can give is amazing and such beautiful thing to witness. The exhaustion and struggle for the support people/parents is never ending and if you can help a family like theirs, please do. Our whole world is better when we have folks like Johnathan in our community, and when we have parents like his raising their children around us all. ❤
Ohhhh my gosh !!!....Jonathan seems like a lot of work ! I hope this family gets outside support. God Bless this family !