I feel a sadness in the dad. I think he wants to give his sons the world, and worries about how they'll be after he's gone. That's a heavy burden, and I wish them all the very best. ❤️
As a special needs parent it is THE worry… what happens after we are gone? Who will look after them as well as we do? Who will care, love and protect them as much as we do?
There is no luck in this world we as a society have to decide to make a safety net for these people, or we leave it to chance they die under some cardboard on the streets.
This channel should be part of college special education programs. I am a former special education teacher and this channel is top notch. Thank you for showing the world what empathy and compassion really is. ❤️
I used this channel as a source in a presentation about communication disorders in my special education class. Everyone loved it and my teacher said he will be using SBSK in his future classes❤
Absolutely ❤️ I just wish they would’ve been able to have at least one able bodied child so that they would know these two would be well taken care of after they’re gone. I’m sure that’s very heartbreaking for them, but also at the same time, they are rocking this. They’re so amazing and positive about it all. I would LOVE to meet so many of these families. And just give these kids or adults a hug, or just be a friend to them❤️
@@luvhorcez2162Y al mismo tiempo se nota,lo dicen,que están Muy preocupados por el futuro de sus hijos,miedo de quedarse sin fuerzas,de no poder cuidarlos...de faltarles el día de mañana...quién los cuidaría?😢😢
@@MypronounIsKingwow! Calling someone delusional because she stated what was said at that moment and thought it was beautiful! She never said he said that’s what it meant or was, him saying it at that moment made it beautiful to her! You must be the delusional one! Smh…
I can tell that Luke really has a great understanding of the works around him, you could see him nodding and verbally acknowledging things he agreed with when his parents said them. A great reminder that nonspeaking doesn’t equal not understanding!
@@Lroselovely88 absolutely! My littlest one is 3, non verbal autism. I can only dream and pray that she'll be able to cognitively understand and use ASL as well as Luke! ❤️
Well Said ! Kinda like when anyone is in a coma , you should NEVER SAY ANYTHING THAT MIGHT UPSET THEM BECAUSE JUST BECAUSE THEY CAN NOT RESPOND DOESN'T MEAN THAT THEY CAN'T HEAR "" EVERYTHING "" !!! ❤ 2 ALL!
I really like these parents --- they aren't the "isn't everything rosy" kind of people who have to put on a good front for others. They express their frustrations and heartbreak - realistically - as well as the things they love about their sons. These people have a lot to deal with ---- but they don't fall into that trap that everything has to be perfect and "a learning experience" for Matty and Luke. I really hope there is some kind of support for the family so the whole responsibility of the sons takes over. I know they are the main focus of the parents' lives, but they need to have some respite.
im no mum myself, but i work with people with disabilities. its my mainjob. i cant tell, how much more natural i feel at work, with them. every single characteristic and special need makes every person unique. i know, people dont want to hear, but every person with a special need seems to be a gift to the world. they tell the truth, they show us, how true living works. in so many ways. sorry, for my bad explanation quality in english. but i hope the positivity was transported.i mean, look at luke, id right away know what to work with him! hes such a bag full of joy!and matty is for sure deeper than he seems on first sight. those eyes were active 😊 im sure, your 2 children are just the same gift to the world 😃🎉 all the best to you!
@@cheerubebayonettaholopaine2638 your english is perfect, better than some native speakers, so don't worry at all! your point got across perfectly you do great work, I hope you're still taking time for yourself
The parents grief is palpable. But so is their love for their sons. I pray they meet each day with all of the resilience they display here. Such nice people.
This was one of the most powerful episodes. These are raw, uncomfortably honest conversations. These are painfully open-ended and unresolved issues. Thank you for opening up the space for voicing difficult situations. I wish you didn’t cut the video so abruptly. It’s okay to say these hard things. It’s okay to feel like this. These parents have very impressively analyzed the astonishing complexity of their sons’ needs and their challenges. Thank you for magnifying the intrinsic but often ignored value of silence.
the abrupt ending during that convo was a little jarring but it definitely made it hit harder and I'm grateful they included it. all the best to this lovely family for sure
I wish I could express how much your comment spoke to my soul, in the beautiful way you articulated your thoughts. I could read every comment you leave around UA-cam and never get bored. This was a breathe of fresh air. Thank you @classicalroach
I totally agree that the video should not have been cut like that. It's almost like saying 'we can't go there or discuss that thought'. But we can and should. It's about being honest and recognising the reality. Beautiful family and may god bless them.
He tends to cut a lot of his videos like that. Sometimes they run out of space sometimes when some families it's hard to figure out how to close the video. They don't do it every time but they aren't all perfectly mastered finishes. Usually the ones that cut off like that get ppl thinking about the real people he's interviewing in the video and not their editing skills. It drove me crazy at first too, til he explained it in one of them
You can see the worry in there dad's eyes. He's wondering what is going to happen to his kids when him and his wife pass away. I loved this episode they were very honest and didn't sugar coat anything.
I wish they had at least one able bodied child so that they wouldn't be faced with the sad uncertainty regarding their future when they're gone or just outright physically incapable. And I know it will be expecting too much of the able bodied kid and it will be hard on hypothetical him/her but better have a sibling take care of you after your parents than someone else, like the mother said who'd more likely do a terrible job and not have any emotional attachment and ever "truly" care for them. I'm the eldest of three siblings, all of us are without special needs. and my youngest Sibling is 15 years younger and he's just 4. I would do anything for my siblings tbh. Bless this family and I hope they have it good. Luke's affection to his mother like every 5 minutes is heartwarming to see and he's so cute.
Is there no care for special needs people in the USA? My aunt is special needs and she’s been able to live in a home for people with special needs her whole life.
@@TheAxeamanyes there is care available. Most of our institutions have closed, the hospital type settings. Now we have what are called "community homes" in my state (Tennessee) It can be anywhere from one person to 4 roommates, some times more if the house is big enough. Ive worked in those homes and I have a family member who lived with me for 2 years after his mother died. Hes my little cousin. He turned 21 with me and i wanted him to stay with me. His mother wanted him with family. But he didnt have a conservator so he was able to make his own choices as a legal adult. He chose to go into a community home. He lives with a couple other males his age. They have "support people" around the clock. He has a job in public and has a "job coach" with him when needed. So youve got the support staff and there's also a care coordinator, who in his case works his state medical insurance provider, that acts as a case manager. Then theres the hierarchy within the agency that employees the support staff and runs the home. Some people have one on one supprt staff, some homes have one support person to 4 people, depending on the needs of the people. They help them with all things daily living. Whether it be dressing, eatinf, shopping,paying bills, getting to the doctor, going out to eat or other places want to go. But most people would have their person with a family member if theres a choice because family is seen as safer, more likely to actually care about the individual, rather than just going for a paycheck.
I have 2 special needs kiddos & felt a huge connection with this Mom. She has a wonderful way with words & the ability to verbalize much of what many of us feel. I really enjoyed seeing her bond with Luke & how she validates him daily.
My brother has kabuki syndrome and the mother's words brought tears to my eyes, I know exactly how you and her feel. Some days it's overwhelming and honestly I don't know if I can keep it up
It seems like Luke actually has a lot to say and he's trying. It's interesting to imagine what must be going on in their minds. This is such a warm family. I wish them all the best.
When he brought in his Woody toy to show the camera!! That was so cute! They were talking about connecting with Luke and he went and grabbed his favorite toy. He's so cute and understands what's going on
Luke fascinates me. If you look at his facial expressions when other people are talking you can see his intelligence. I really hope the family finds some sort of technology or method of communication that fits his needs and enables him to communicate better.
Hi! Luke’s mom here. He actually has an iPad and uses a communication app. He has over 50 signs. It’s the auditory processing that makes him frustrated. We were trying to keep him from getting frustrated. When people talk a lot to him he gets overwhelmed. I really should have showcased his communication abilities but wanted him to have a calm interview. 🥲
@@chaoticmamaof2 you and your husband are doing a great job. I can just feel the love pouring out of the screen. Thank you for sharing your story and family with us.
however, the support system got their sick sons. If not for the modern treatment, these sons would have left sooner and made their parents free of the anguish they have to go through daily. And that would be natural and normal.
"We feel trapped when we feel like we don't have a choice...but we do have a choice." Such impactful words from this mother. I hope that the parents are able to get respite care from time to time so they can recharge and rest.
“When you love someone so much, it’s excruciating walking through their struggles with them.” - That hit me so hard because it is so true. I pray the very best for this family. God bless them
@@mash3014I think they were joking, a bit of dark humor to lighten a difficult situation. But it’s true that some parents of adults with profound disability hope they outlive their children. It’s hard for parents to bury their kids but for some it’s unimaginable to think of who will take care of their kids when they’re gone. Too many care facilities are poorly operated and they don’t want their kids being abused.
Luke is extremely communicative! When Chris asked, “What would you like the world to know about Luke?” to the father, Luke got up and retrieved his Woody doll. The world should know I love Toy Story and Woody, in particular, Luke’s actions say. I think Luke is extremely intelligent, but his communication just looks different. I think if we could read his mind, his thoughts would be just as complex and articulate as ours. I also think he was playing a game with his mom when she was telling him to quiet down, and he intentionally got louder! 😃 I love how she laughed at that instead of being mad. What magnificent parents. The raw honestly being articulated is so liberating and validating to all parents feeling the same things. And Luke’s affectionate nature is incredibly endearing.
@@utoobdorkthe thing is we really do not know what's going on in their minds, his coginitive and receptive ability might as well be very functional but obviously the expressive side gets lost and he's not able to communicate very well. So we don't know if he REALLY has a toddler's hyperactivity, the better out of two is just think of the best. Because he really does seem to be listening and nodding. He also answered Chri's questions of whether he liked to be hugged or given a hand shake. And his mother in the comment section told that he has a communication app he uses on his iPad to communicate. And he has over 50 signs on It that he uses and it's only the auditory processing that makes him frustrated. I honestly think he's able to understand and does not have the ability of a toddler.
@utoobdork Watch his eyes from when the question is asked to when he makes the decision to stand up and get his toy- I thought the connection was pretty clear. No one is suggesting the parents are dealing with a secret genius, more that Luke is clearly understanding the conversation even though he can’t fully verbally communicate.
I wish we could see or hear the rest of what the father was saying at the very end. Obviously these are two very loving parents, but spending every waking moment as caregivers instead of having a life outside your family.. you can feel their burnout.
Luke is a real good looking guy! U can tell that he has so much heart! And, Matty- it seems like he just likes being around people who want to be around him! Such sweet boys!❤️
It was jarring to end on that note, but so important, I think, to see the reality of being 24/7 caretakers to two adults (or near) with significant needs. So much love and hope and amazing progress (Luke has fantastic communication, and it's clear that it's getting better all the time!), but also exhaustion, fear of the future, and the guilty feeling of feeling trapped and forced to live a certain way forever. I'm glad the parents were open and honest at the end there, and I hope that they have an outlet (therapy, perhaps?) and respite options, even if just for a few days of the year. They clearly love their sons fiercely, and it's reflected in the obvious bond both boys show in return when interacted with. What an amazing beautiful family.
I actually appreciate that SBSK isn’t censoring those hard topics 😢 I’m a person with a disability myself, and it is NOT sunshine and roses and inspiration a lot of the time. The world is still not very accommodating for people with disabilities and it could be so much more ❤ the only way to change that is to talk about it. These are authentic issues that people with disability’s have to consider.
@@OpalLeigh I have always loved that about SBSK. I cannot deal with "inspiration porn" and presenting disabled people in a way that does not show their full truth. Chris and Alyssa have mastered the ability to give us an empathetic and compassionate, but realistic and honest insight into the lives of hundreds (if not thousands at this point!) of people who otherwise wouldn't have a voice.
I'd love to see a longer more in depth interview of the mum and dad. Together as mum and dad and then individually. I feel they have so much more to say, vent, express. I found what they said very interesting. I absolutely love the honesty in these videos, it's nice to be able to listen and ask questions and discuss in the comments section about topics that are sensitive, difficult or just not talked about. I hope you're all well and as healthy as you can be.😊 ❤
Мне тоже кажется , что тема недосказана и нераскрыта до конца .особенно _ Sexualität von Jungen Männern .у парня есть потребности , это очень заметно в поведении и общении , думаю , ему хочется нежности и любви .но как быть в таких случаях ? по рассказу многих людей, которые в теме , таким людям нужен секс , и они начинают проявлять свои эмоции к родственникам _ матери , отцу , сестрам , братьям .эта тема неудобная и возможно неприятная и часто тема замалчивается , но она присутствует .и это проблема для семьи , которая имеет взрослых аутистов мужчин .
@@sternzeichenlowe7958 That's a strange thing to bring up. Some people with autism act and think a lot younger than they are so I don't think this kind of thing is healthy to think about. My young daughter hugs and sniffs me similar to Luke, it's sensory based, nothing to do with what you're suggesting.
I love how Chris always so carefully follows the caretakers directives on how best to communicate with the other-abled people in the interviews. For Matty: “the sound of silence” is the way to go ❤
@@DenyDefendDepose358 disabled people almost always prefer the term disabled. We dont need to tiptoe around it, or pretend that disabled people don't have barriers in life by saying "other" or "differently" instead of "dis-"
@@ryan-anarchist-2535so agree with you. Why do some people treat "disabled" like a slur? They have special needs and they're unable to perform certain daily functioning tasks on their own.
@uteswanepoel5602 Please use the term "disabled". Dont use cutesy term. I am physically disabled. I am partially paralyzed. I am not "other abled" "differently abled" or any of those odd terms ables come up with because they seem to think "disabled" is insulting to us. Its not. Disability just is part of the variation of human experience. Dont pretend like disability doesnt exist by trying to erase it from language. Acknowledge it. We dont find it insulting.
Luke knows whats going on around him and understands whats being said. You can see that he is trying really trying to communicate and has found ways to let his parents know what he is saying and getting them to articulate it.
Amen - AMAZING Mom and Dad. Such a challenging situation but they have keep it together and thrived. Know all of our good positive energy is with y'all in the rough times.💫 and so happy for you in the good times.
Same here. They are such precious kids and parents. I strive to be a good mom to my kids. Hearing about how we need to have more patience is a wonderful reminder. Even when things are hard, we just need to take the good with the bad. Enjoy those happy moments.
Thank you for mentioning the father. So many comments on this wonderful story and comparable videos (and many videos on parenting in general) often focus solely on the mother or female caregiver.
It's so, so important and brave of them to have opened up about the realities of parenting adult children with extreme disabilities. There are no days off or even hours off (unless you can afford to pay someone of an appropriate caliber to give you that time). It is unrelenting, truly, and the burnout is so real, it's omnipresent. I pray for better,more sustainable caregiver options for the future: as it is, professional caregivers are paid so bleakly, their own burnout causes constant scarcity in the field. One day we will all see each other's humanity and realize where we most need to support our communities.
Agreed! They’re amazing not only for their sacrifices but also for sharing this with all of us! It’s so important to give a voice to someone who can’t physically speak for themselves, or at the very least help spread awareness for people who live with special life challenges. I hope this family can find fulfillment and get everything out of life that it has to offer them ❤
@@newgrandma979My oldest son has a son who is autistic. At this time he works two jobs to ensure that when he’s gone, there’s money in a trust account to take care of Riley, if needed. It’s a facing reality moment for sure, but it’s necessary. You not only need to give them the best life possible while you’re here raising them, but you need to give them the best life possible when you’re not, and that requires a lot of time, money & planning. I am thankful my grandson (he’s 8) is no longer non-verbal & is high functioning. We are hopeful that he has a bright future & will be able to take care of himself. Hope for the best and plan for the worst. ❤
@@Fretube I apologize for my delay in replying to you. I just saw your comment. My grandson was almost 6 years old when he started talking. A lot of what he says is Echolalia- he repeats what he hears other say, but he’s slowly learning how to use words to communicate properly.
I feel for all of them. I had a mentally & physically disabled daughter who died at 30. She had a twin sister who died at birth. Jessica was very sweet but could not walk. She talked a little. I know how hard it is to deal with one child like that but two I can't imagine. God bless you all. It was very touching.
I don't know which one I feel more love and compassion for - mom or dad. Mom's a complete angel, and you can tell dad is ALL IN for his family... I love all four of these people. May the Lord bless them and keep them ❤
I feel very connected to Luke, like I really wanted to understand what he was trying to communicate. I understand he is non-verbal, but felt he really had SO much he wanted to say... I hope one day he is able to do that. When I was younger I worked at a community center where we had a very special child with autism who was non-verbal and a few years later he was taught how to use a computer and type somehow, and he finally was able to express that he was trapped in his body and was able to write the most beautiful poetry about his life.. It was so incredible.
I can write much better than I speak! 😊 ppl sometimes get annoyed at my lengthy emails, texts, etc but they don't understand that I can't express that in person especially with those I do not know very well but if I am told to email them or text we'll, be prepared for a story!! Ha! 😁
Luke giving Chris a hug was absolutely priceless. The love of these parents is so prevalent. I appreciate their honesty. Praying for them to be strengthened as their daily and future choices present themselves.
Luke is so much more aware and present than a lot of people probably give him credit for. When he was atiing with his dad and dad was asked to tell us about Luke, he was quiet and looked to dad and almost prompted dad to answer. He seemed to try to encourage dad to talk about him. When he got up to get the Woody, it almost seemed like he was trying to tell us about himself. He brought the Woody almost to encourage dad to tell us about Woody being his favorite and then put it back and came back and sat back down. I think he is much more present, aware, and capable of communicating for himself then it even seems.
What a beautiful, wonderful parents!❤ I have a healthy kid, he’s 13, his father never even met him. Just not interested in knowing his son. And look at this amazing dad! He loves his boys no matter what. I wish my kid had a dad like this guy.
Although Luke is not able to verbally communicate, there is so much emotion in his eyes. Matty and Luke seem like amazing humans along with their parents. 💕
I’d like to give both parents a big hug. Thank you for your honesty and willingness to be vulnerable on camera. Your boys are beautiful and I’m rooting for all four of you. ❤
God Bless this Beautiful Family I have a 40 year old Cerebral Palsy Daughter- I am 73, the terror i have that my time on this earth is coming to an end . All I hear are horror stories of these care homes. People think your awful when you say, I wish we can go together. Someone please find us Safe Homes for our innocent children when we pass on
Every time I've clicked on one of your videos I've been so grateful. I've grown up with an autistic brother and I feel guilty that I've not as accepting that he just has different needs. You've helped me remember to lead with love and compassion every day, for others as well as myself. You have an amazing impact on this world!
My grandson has multiple disabilities including cp. It is heartbreaking when he is in pain and we don’t understand him. He is a joy in our lives and we love him so much. Thank you for sharing.
The mom's tidal wave analogy is such a beautiful and accurate way to describe parenting a child woth special needs. These videos have benefited me imensely because i often feel alone in my situation and feelings. I totally understand the feelings of being trapped in your situation. It feels like life made the decision for you. Its hard when you cant spontaneously make a doctor appointments or have coffee with a friend because there are limited people that can care for your child while you do so. I'm adding that I'm so glad Chris has the means to continue these interviews. These interviews make me feel less alone and I always learn from how others are making things work despite obstacles. I could totally see this mom being a good friend and being of similar age.
I have a son with Down's syndrome and autism so I can understand some of the feelings these parents have of extreme love for their children mixed with a sadness that things can't be different. God bless this family ❤
My heart reeeeeally goes out to mom I understand exactly what she means at the end of the video when she talks about her limitations because we can only control things for so long until our own bodies and minds start to give out on us… and she has had her hands full for so long. God bless you and your family from mine to yours! ❤❤❤❤
Seen. Heard. May sound gruesome, but the feelings are completely understandable. No one will care for our loved ones as well as we can & will. Precious family ❤
The sadness when the father talked about not being able to talk and converse with his children... So relatable. My son has autism and nonverbal, and the thing that breaks my heart the most is that i probably will never get to have a conversation with him and have him tell me all about how he sees the world.
I appreciate the candid way the parents talked in the end and I love how the mom said that it's her choice to take care of her children day by day. There's a lot of love in this family!
Anytime I think I'm jealous of people with money and a family these videos help me realize that we are fortunate to just have properly working bodies and brains. I used to work taking care of adults with special needs, I miss it, but unfortunately the system doesn't pay the workers well.
That is very true. I have been dirt poor my entire life and have to remind myself the things I am fortunate enough to have etc. Currently live in a 1950's new moon trailer it's pretty old but at least I'm not homeless lol. I've been sober from drugs and alcohol for 9 yrs which is also a blessing. Things like that you have to think about some ppl have it much worse be thankful you were even able to wake up today the people that have died don't get the chance to wake up today. :(
@@sliverbox271991 it’s nice to have money my brother is fortunate my family has the funds for his care however you can’t control what your child comes out with and not everyone has money to be able to give them the medical care they need.
I hope that this family qualifies for subsidized respite care. Identifying burnout is a great step. Next step is finding respite care. Having a few hours to yourself or alone as a couple is essential to surviving an intense home environment. Even if it is out of love, it still hurts when you get burnt out. Much love to your family.
This one made me cry. These parents are angels on earth. Luke is so loving and affectionate and has the most beautiful blue eyes. ❤Both boys are so handsome. So nice the church community is so supportive.
If anyone is ever having a bad day - and feeling a bit sorry for themselves - just watch one of these episodes - and feel better - knowing perhaps today wasnt as bad as we thought. Thanks Chris - you are a genuine really good guy - educating us all about life.
The parents are to be highly commended for how well they are doing with 2 special needs boys, i know times it can be hard but after doing it for so many years you find the strength within to keep going. God gives you the strength to keep going.
The last words are very painful,very brutal yet,very truthful.That is the right way of going for this situation,as harsh as it might sounds...No need to justify it or feel guilty,it is what it is...There is no love like good parent's love,blessed and cursed at the same time...
Why the cut at the end? This was a really interesting interview, and I’d love for a follow up with the parents so they could have a platform to vent and reflect. These honest, raw, and different perspective videos like the Mark Elhert one are very thought provoking. Also, Luke looks so much like Joaquin Phoenix.
I started watching this channel way before having kids. Now I am the mom of two special needs kids. This channel has helped so much to cope and accept and know that I’m not alone.
I feel terrible for the father...I can see his pain in his smile because I've felt that way for a long time, up until a year ago. Trying to make it through each day..feeling like you have to put on a smile so that other people think you are okay...I hope he can find help for himself before it gets to be too much...❤❤❤ you are a very strong man, Sir. I hope you see this wherever you are. Love from Canada
18:10 crazy real talk right here. She understands the grim future they face. These kids won't grow up, no light at the end of the tunnel. her life will only become more exhausting and difficult as they get older.
I wish that I could communicate my emotions so well as this momma. She has such an amazing understanding of her own feelings and others. She's the kind of person that you can meet once at the store, library, park and have a small interaction that can shape how you think and interact with yourself and people the rest of your life.
That last sentence is something I have always said myself. Until someone walks in our shoes they may not understand. That sentence comes from unconditional love and 100% devotion. God bless you both and your incredible boys ❤
9:20 when Chris asked "What do you want the world to know about Luke?" Luke's expressions, gestures and and tone of his vocalisations seemed to me like he was answering the question himself. Maybe to him, he was saying a full sentence everyone should be able to understand. And when his dad said "I don't know" it felt like Luke said "But I just told you!"
Cases like these highlight the weaknesses of today's individualistic society. We need to rebuild community, and take care of our own. I wish they had access to more support. Much, much more.
Not everyone can keep a marriage together in the best circumstances. I hope you both realize what an amazing job you are doing. Not only with your kids, but with each other, and as a family.
I understand their feelings of worry for their children's long-term care. I'm 55 with several severe health issues that are getting worse, and I have an 85 year old mother who is starting to fail. But I also have a 52 year old downs syndrome brother who is also starting to have more difficulties, and I worry that I may leave prematurely. It terrifies me for him. I'm even worried that I may not make it long enough for mom. I don't want them to end up being taken care of by strangers, especially my brother. He doesn't handle change well.
I qualify these parents, heroes and angels.... I am speechless in hearing their love and passion for their kids. May you all be blessed more than before.
Wow, this family is simply great. I feel sorry for the mom and dad, but at the same time they obviously don't let it get them down. I can't imagine having to go through what they have. All the best to all 4 of these beautiful souls 🫶🙂
Wonderful family. Love the soft spoken and calming energy of the dad. His sons are his twins. I can see his love for them. Love how Luke engaged in the interview
The parents are so strong to handle this for so long, into the sons' teens. In a very different way, I took care of my mother in her dementia years for over a decade, when I was getting older myself which had physical/mental obstacles toward the end. The mom is so articulate speaking of tidal waves. It is much more difficult when the caregiving is for the kids who may ultimately out-live the parents, which makes future decisions daunting. Bless this wonderful family.
These parents are heroes. You can feel the love in this family. It amazes me that all these kids, verbal or non-verbal warm up to Chris. It is no coincidence. Very touching video.
The ability to communicate and be understood is SO important. It makes sense that it’s calming for Luke to be understood and have his feelings heard. My son is also autistic and when he had trouble communicating, his tantrums and meltdowns were severe and destructive. He would hurt himself and break things. When he finally started to be able to communicate, it changed our world. What a wonderful thing it is that Luke here can do some ASL to be able to communicate!
That’s so brave and honest of the mom and dad for sharing their feelings about how difficult caregiving is. It is so hard. Caregivers need care too. Hugs to this family.💜💜
I have an audio processing disorder and struggle in school when I was child but grew out of it luckily by getting A’s and B grades. I got honor role in college three times a row.I was judged that I was lazy or I couldn’t read ext. that judgement made me stronger and to prove to my self i can do it. That my little story. This family is compassionate and strong. The patience incredible too. ❤️ Luke is funny and precious.
I feel a sadness in the dad. I think he wants to give his sons the world, and worries about how they'll be after he's gone. That's a heavy burden, and I wish them all the very best. ❤️
I came here to see if anyone would say it. The dad's sadness is palpable. But so is his love and a sense of peace.
As a special needs parent it is THE worry… what happens after we are gone? Who will look after them as well as we do? Who will care, love and protect them as much as we do?
There is no luck in this world we as a society have to decide to make a safety net for these people, or we leave it to chance they die under some cardboard on the streets.
So true,but I believe in the holy spirit to protect this two angels.
I know there is Lord above everything...Jesus takes care of our burdens...I speak as a mom with 3 disabled kids!❤
This channel should be part of college special education programs. I am a former special education teacher and this channel is top notch. Thank you for showing the world what empathy and compassion really is. ❤️
And high school requirement for graduation
It's my very favorite channel. I have a sister who lives with me, who has trisomy 21.
Agree
I used this channel as a source in a presentation about communication disorders in my special education class. Everyone loved it and my teacher said he will be using SBSK in his future classes❤
@theashwoodfaerie
Has Chris said that in the past?
What great people. Those boys lucked out with beautiful, kind, compassionate parents.
And at the same time those parents have obviously been blessed with two wonderful boys. It's so cool how they bring out the best in each other 😊
Absolutely ❤️ I just wish they would’ve been able to have at least one able bodied child so that they would know these two would be well taken care of after they’re gone. I’m sure that’s very heartbreaking for them, but also at the same time, they are rocking this. They’re so amazing and positive about it all. I would LOVE to meet so many of these families. And just give these kids or adults a hug, or just be a friend to them❤️
@@luvhorcez2162Y al mismo tiempo se nota,lo dicen,que están Muy preocupados por el futuro de sus hijos,miedo de quedarse sin fuerzas,de no poder cuidarlos...de faltarles el día de mañana...quién los cuidaría?😢😢
They are truly blessed.
@@ThattechniciangirlB Look around your area. I’m confident you’ll be able to find someone to support. God bless you❣️✌🏽
How do you say happy? “Momma!”
I literally cried. How beautiful.
I love them so much! Oh, the mom & dad are absolute angels! 🤗
@@atmywhitsona whole bunch of incredibly beautiful beings. we could learn so so much from this family!! i feel lucky to have been exposed to them.
You are delusional. he said that because he can’t say anything else
@@MypronounIsKingmaybe. I couldn’t do what these parents are doing though.
@@MypronounIsKingwow! Calling someone delusional because she stated what was said at that moment and thought it was beautiful! She never said he said that’s what it meant or was, him saying it at that moment made it beautiful to her!
You must be the delusional one! Smh…
I can tell that Luke really has a great understanding of the works around him, you could see him nodding and verbally acknowledging things he agreed with when his parents said them. A great reminder that nonspeaking doesn’t equal not understanding!
Yes! ❤️
Very smart kid that’s for sure
His verbalizations are quite clear as well as his great use of ASL!
@@Lroselovely88 absolutely! My littlest one is 3, non verbal autism. I can only dream and pray that she'll be able to cognitively understand and use ASL as well as Luke! ❤️
Well Said ! Kinda like when anyone is in a coma , you should NEVER SAY ANYTHING THAT MIGHT UPSET THEM BECAUSE JUST BECAUSE THEY CAN NOT RESPOND DOESN'T MEAN THAT THEY CAN'T HEAR "" EVERYTHING "" !!! ❤ 2 ALL!
I really like these parents --- they aren't the "isn't everything rosy" kind of people who have to put on a good front for others. They express their frustrations and heartbreak - realistically - as well as the things they love about their sons. These people have a lot to deal with ---- but they don't fall into that trap that everything has to be perfect and "a learning experience" for Matty and Luke.
I really hope there is some kind of support for the family so the whole responsibility of the sons takes over. I know they are the main focus of the parents' lives, but they need to have some respite.
Sherry…You totally get us! ❤❤❤
Agreed!!!
"we knew right away that we loved him" as the mother of 2 disabled adult children, I feel this deep in my bones.
I'm not a mother at all and it strikes me hard. This is the epitome of loving parents and I can't say how touching it is.
Bubu
im no mum myself, but i work with people with disabilities. its my mainjob. i cant tell, how much more natural i feel at work, with them. every single characteristic and special need makes every person unique. i know, people dont want to hear, but every person with a special need seems to be a gift to the world. they tell the truth, they show us, how true living works. in so many ways.
sorry, for my bad explanation quality in english. but i hope the positivity was transported.i mean, look at luke, id right away know what to work with him! hes such a bag full of joy!and matty is for sure deeper than he seems on first sight. those eyes were active 😊
im sure, your 2 children are just the same gift to the world 😃🎉 all the best to you!
Same
@@cheerubebayonettaholopaine2638 your english is perfect, better than some native speakers, so don't worry at all! your point got across perfectly
you do great work, I hope you're still taking time for yourself
The parents grief is palpable. But so is their love for their sons. I pray they meet each day with all of the resilience they display here. Such nice people.
Who will care for the brothers when parents gone. Imagine difficulty adjusting from home to institution
This was one of the most powerful episodes. These are raw, uncomfortably honest conversations. These are painfully open-ended and unresolved issues. Thank you for opening up the space for voicing difficult situations. I wish you didn’t cut the video so abruptly. It’s okay to say these hard things. It’s okay to feel like this.
These parents have very impressively analyzed the astonishing complexity of their sons’ needs and their challenges.
Thank you for magnifying the intrinsic but often ignored value of silence.
Greatest comment. The entire comment, so poignant So incredible. Thanks.
the abrupt ending during that convo was a little jarring but it definitely made it hit harder and I'm grateful they included it. all the best to this lovely family for sure
I wish I could express how much your comment spoke to my soul, in the beautiful way you articulated your thoughts. I could read every comment you leave around UA-cam and never get bored. This was a breathe of fresh air. Thank you @classicalroach
I totally agree that the video should not have been cut like that. It's almost like saying 'we can't go there or discuss that thought'. But we can and should. It's about being honest and recognising the reality. Beautiful family and may god bless them.
He tends to cut a lot of his videos like that. Sometimes they run out of space sometimes when some families it's hard to figure out how to close the video. They don't do it every time but they aren't all perfectly mastered finishes. Usually the ones that cut off like that get ppl thinking about the real people he's interviewing in the video and not their editing skills. It drove me crazy at first too, til he explained it in one of them
You can see the worry in there dad's eyes. He's wondering what is going to happen to his kids when him and his wife pass away. I loved this episode they were very honest and didn't sugar coat anything.
Que Dieu les aide et les assiste
I wish they had at least one able bodied child so that they wouldn't be faced with the sad uncertainty regarding their future when they're gone or just outright physically incapable. And I know it will be expecting too much of the able bodied kid and it will be hard on hypothetical him/her but better have a sibling take care of you after your parents than someone else, like the mother said who'd more likely do a terrible job and not have any emotional attachment and ever "truly" care for them.
I'm the eldest of three siblings, all of us are without special needs. and my youngest Sibling is 15 years younger and he's just 4. I would do anything for my siblings tbh.
Bless this family and I hope they have it good. Luke's affection to his mother like every 5 minutes is heartwarming to see and he's so cute.
@@alicemarthedooh3031Amen .
Is there no care for special needs people in the USA? My aunt is special needs and she’s been able to live in a home for people with special needs her whole life.
@@TheAxeamanyes there is care available. Most of our institutions have closed, the hospital type settings. Now we have what are called "community homes" in my state (Tennessee) It can be anywhere from one person to 4 roommates, some times more if the house is big enough. Ive worked in those homes and I have a family member who lived with me for 2 years after his mother died. Hes my little cousin. He turned 21 with me and i wanted him to stay with me. His mother wanted him with family. But he didnt have a conservator so he was able to make his own choices as a legal adult. He chose to go into a community home. He lives with a couple other males his age. They have "support people" around the clock. He has a job in public and has a "job coach" with him when needed. So youve got the support staff and there's also a care coordinator, who in his case works his state medical insurance provider, that acts as a case manager. Then theres the hierarchy within the agency that employees the support staff and runs the home. Some people have one on one supprt staff, some homes have one support person to 4 people, depending on the needs of the people. They help them with all things daily living. Whether it be dressing, eatinf, shopping,paying bills, getting to the doctor, going out to eat or other places want to go. But most people would have their person with a family member if theres a choice because family is seen as safer, more likely to actually care about the individual, rather than just going for a paycheck.
I have 2 special needs kiddos & felt a huge connection with this Mom. She has a wonderful way with words & the ability to verbalize much of what many of us feel. I really enjoyed seeing her bond with Luke & how she validates him daily.
Yes! It is so validating & comforting to hear my thoughts and emotions and even fears comming out of someone else❤
Much respect and love too you ❤❤❤❤
I loved that she was honest about the burnout and it seems like everyone in the room understood and didn’t demonize it.
@@JessieInTheSky09 yes😊
My brother has kabuki syndrome and the mother's words brought tears to my eyes, I know exactly how you and her feel. Some days it's overwhelming and honestly I don't know if I can keep it up
It seems like Luke actually has a lot to say and he's trying. It's interesting to imagine what must be going on in their minds. This is such a warm family. I wish them all the best.
His dad can understand him and hes like nodding and being positive like wow
When he brought in his Woody toy to show the camera!! That was so cute! They were talking about connecting with Luke and he went and grabbed his favorite toy. He's so cute and understands what's going on
He knows what the parents are saying. You can tell.
Does Luke have Angelmans? Does anyone know?
idk if you've seen the Whittakers but it's kinda like the guy who barks to communicate. I'd be so interesting to know what they're thinking.
Luke fascinates me. If you look at his facial expressions when other people are talking you can see his intelligence. I really hope the family finds some sort of technology or method of communication that fits his needs and enables him to communicate better.
That struck me as well. There's absolutely nothing wrong with his intellect, he just can't communicate.
I was thinking exactly the same. His eyes!
Hi! Luke’s mom here. He actually has an iPad and uses a communication app. He has over 50 signs. It’s the auditory processing that makes him frustrated. We were trying to keep him from getting frustrated. When people talk a lot to him he gets overwhelmed. I really should have showcased his communication abilities but wanted him to have a calm interview. 🥲
@@chaoticmamaof2 you and your husband are doing a great job. I can just feel the love pouring out of the screen. Thank you for sharing your story and family with us.
Agreed! I especially noticed this at 15:15. You can tell he's comprehending and I feel I'd get along with him just fine.
These parents must be exhausted. They seem like beautiful people, I hope they have a support system so they get to have a bit of a break.
however, the support system got their sick sons. If not for the modern treatment, these sons would have left sooner and made their parents free of the anguish they have to go through daily. And that would be natural and normal.
You are saying true.
"We feel trapped when we feel like we don't have a choice...but we do have a choice." Such impactful words from this mother. I hope that the parents are able to get respite care from time to time so they can recharge and rest.
“When you love someone so much, it’s excruciating walking through their struggles with them.” - That hit me so hard because it is so true. I pray the very best for this family. God bless them
That ending where they talk about how they have to die together is brutal, nice parents taking care of disabled people
im confused did they acc mean that they would like to pass away all together like they plan to?
@@mash3014I think they were joking, a bit of dark humor to lighten a difficult situation. But it’s true that some parents of adults with profound disability hope they outlive their children. It’s hard for parents to bury their kids but for some it’s unimaginable to think of who will take care of their kids when they’re gone. Too many care facilities are poorly operated and they don’t want their kids being abused.
Very true and well spoken.
@@jessdrewthis
Luke is extremely communicative! When Chris asked, “What would you like the world to know about Luke?” to the father, Luke got up and retrieved his Woody doll. The world should know I love Toy Story and Woody, in particular, Luke’s actions say.
I think Luke is extremely intelligent, but his communication just looks different. I think if we could read his mind, his thoughts would be just as complex and articulate as ours.
I also think he was playing a game with his mom when she was telling him to quiet down, and he intentionally got louder! 😃 I love how she laughed at that instead of being mad. What magnificent parents. The raw honestly being articulated is so liberating and validating to all parents feeling the same things. And Luke’s affectionate nature is incredibly endearing.
He is not extremely intelligent. He literally has a developmental disability...
@@utoobdorkthe thing is we really do not know what's going on in their minds, his coginitive and receptive ability might as well be very functional but obviously the expressive side gets lost and he's not able to communicate very well. So we don't know if he REALLY has a toddler's hyperactivity, the better out of two is just think of the best. Because he really does seem to be listening and nodding.
He also answered Chri's questions of whether he liked to be hugged or given a hand shake.
And his mother in the comment section told that he has a communication app he uses on his iPad to communicate. And he has over 50 signs on It that he uses and it's only the auditory processing that makes him frustrated. I honestly think he's able to understand and does not have the ability of a toddler.
exactly, i like this channel but it's just delusional to believe that luke has a mental capacity anywhere above that of a 4-5 year old@@utoobdork
Extremely intelligent😂 yeah, right
@utoobdork Watch his eyes from when the question is asked to when he makes the decision to stand up and get his toy- I thought the connection was pretty clear.
No one is suggesting the parents are dealing with a secret genius, more that Luke is clearly understanding the conversation even though he can’t fully verbally communicate.
I wish we could see or hear the rest of what the father was saying at the very end.
Obviously these are two very loving parents, but spending every waking moment as caregivers instead of having a life outside your family.. you can feel their burnout.
Luke is a real good looking guy! U can tell that he has so much heart! And, Matty- it seems like he just likes being around people who want to be around him! Such sweet boys!❤️
Hi! Luke and Matty’s mom here. You are spot on!
He is a good looking guy...so loving ❤️ 😍 💖 his mama is great
It was jarring to end on that note, but so important, I think, to see the reality of being 24/7 caretakers to two adults (or near) with significant needs. So much love and hope and amazing progress (Luke has fantastic communication, and it's clear that it's getting better all the time!), but also exhaustion, fear of the future, and the guilty feeling of feeling trapped and forced to live a certain way forever. I'm glad the parents were open and honest at the end there, and I hope that they have an outlet (therapy, perhaps?) and respite options, even if just for a few days of the year. They clearly love their sons fiercely, and it's reflected in the obvious bond both boys show in return when interacted with. What an amazing beautiful family.
I actually appreciate that SBSK isn’t censoring those hard topics 😢 I’m a person with a disability myself, and it is NOT sunshine and roses and inspiration a lot of the time. The world is still not very accommodating for people with disabilities and it could be so much more ❤ the only way to change that is to talk about it. These are authentic issues that people with disability’s have to consider.
@@OpalLeigh I have always loved that about SBSK. I cannot deal with "inspiration porn" and presenting disabled people in a way that does not show their full truth. Chris and Alyssa have mastered the ability to give us an empathetic and compassionate, but realistic and honest insight into the lives of hundreds (if not thousands at this point!) of people who otherwise wouldn't have a voice.
well said guys
Same. Glad it wasn't cut out. Love the honest conversations.
You can tell how much Matty loves his dad by the way he responds to him or how he seems to be looking for
Him when he’s not there
I'd love to see a longer more in depth interview of the mum and dad. Together as mum and dad and then individually. I feel they have so much more to say, vent, express. I found what they said very interesting. I absolutely love the honesty in these videos, it's nice to be able to listen and ask questions and discuss in the comments section about topics that are sensitive, difficult or just not talked about.
I hope you're all well and as healthy as you can be.😊
❤
Мне тоже кажется , что тема недосказана и нераскрыта до конца .особенно _ Sexualität von Jungen Männern .у парня есть потребности , это очень заметно в поведении и общении , думаю , ему хочется нежности и любви .но как быть в таких случаях ? по рассказу многих людей, которые в теме , таким людям нужен секс , и они начинают проявлять свои эмоции к родственникам _ матери , отцу , сестрам , братьям .эта тема неудобная и возможно неприятная и часто тема замалчивается , но она присутствует .и это проблема для семьи , которая имеет взрослых аутистов мужчин .
@@sternzeichenlowe7958I know that there are sexworkers/call girls specifically for disabled people. Maybe that would be an option?
@@sternzeichenlowe7958 That's a strange thing to bring up. Some people with autism act and think a lot younger than they are so I don't think this kind of thing is healthy to think about. My young daughter hugs and sniffs me similar to Luke, it's sensory based, nothing to do with what you're suggesting.
@@neva.2764 Consent is a big issue here. Also….pr*stitution is not exactly a great thing.
Agreed and I think it's important. I also think parents of special needs kids need a reliable source of support and get breaks.
You can tell Luke is mommy’s boy!❤ It’s so funny and cute how he is so calm with his dad but with his mama it’s all kisses and hugs😂
I love how Chris always so carefully follows the caretakers directives on how best to communicate with the other-abled people in the interviews. For Matty: “the sound of silence” is the way to go ❤
Indeed. He is a special vessel of love. 🙏
Other-abled. I like that.
@@DenyDefendDepose358 disabled people almost always prefer the term disabled. We dont need to tiptoe around it, or pretend that disabled people don't have barriers in life by saying "other" or "differently" instead of "dis-"
@@ryan-anarchist-2535so agree with you. Why do some people treat "disabled" like a slur? They have special needs and they're unable to perform certain daily functioning tasks on their own.
@uteswanepoel5602
Please use the term "disabled". Dont use cutesy term.
I am physically disabled. I am partially paralyzed.
I am not "other abled" "differently abled" or any of those odd terms ables come up with because they seem to think "disabled" is insulting to us.
Its not. Disability just is part of the variation of human experience. Dont pretend like disability doesnt exist by trying to erase it from language. Acknowledge it. We dont find it insulting.
Luke knows whats going on around him and understands whats being said. You can see that he is trying really trying to communicate and has found ways to let his parents know what he is saying and getting them to articulate it.
His mother in the comments said that luke uses a communication app on his iPad and has over 50 signs that he uses. So that's nice.
What a beautiful mother and father ❤️💪🏽 you guys are an inspiration to me.
Amen - AMAZING Mom and Dad. Such a challenging situation but they have keep it together and thrived. Know all of our good positive energy is with y'all in the rough times.💫 and so happy for you in the good times.
Same here. They are such precious kids and parents. I strive to be a good mom to my kids. Hearing about how we need to have more patience is a wonderful reminder. Even when things are hard, we just need to take the good with the bad. Enjoy those happy moments.
To all of us
Agree!❤❤❤❤❤
Thank you for mentioning the father. So many comments on this wonderful story and comparable videos (and many videos on parenting in general) often focus solely on the mother or female caregiver.
It's so, so important and brave of them to have opened up about the realities of parenting adult children with extreme disabilities. There are no days off or even hours off (unless you can afford to pay someone of an appropriate caliber to give you that time). It is unrelenting, truly, and the burnout is so real, it's omnipresent. I pray for better,more sustainable caregiver options for the future: as it is, professional caregivers are paid so bleakly, their own burnout causes constant scarcity in the field. One day we will all see each other's humanity and realize where we most need to support our communities.
Agreed! They’re amazing not only for their sacrifices but also for sharing this with all of us! It’s so important to give a voice to someone who can’t physically speak for themselves, or at the very least help spread awareness for people who live with special life challenges. I hope this family can find fulfillment and get everything out of life that it has to offer them ❤
I know I wish there was a gofundme set up so these parents can get a break
It must be tough to know your kids will need forever care, yet not know where they might get that care.
I know what happens to these adult boys when the parents pass?
@@newgrandma979My oldest son has a son who is autistic. At this time he works two jobs to ensure that when he’s gone, there’s money in a trust account to take care of Riley, if needed. It’s a facing reality moment for sure, but it’s necessary. You not only need to give them the best life possible while you’re here raising them, but you need to give them the best life possible when you’re not, and that requires a lot of time, money & planning. I am thankful my grandson (he’s 8) is no longer non-verbal & is high functioning. We are hopeful that he has a bright future & will be able to take care of himself. Hope for the best and plan for the worst. ❤
It's more than tough. It consumes your soul. It's all you think about all day and keeps you up at night.
@@LindaKayHolevaswow its good to hear that your grandson is no longer non verbal. May I ask at what age he started speaking?
@@Fretube I apologize for my delay in replying to you. I just saw your comment. My grandson was almost 6 years old when he started talking. A lot of what he says is Echolalia- he repeats what he hears other say, but he’s slowly learning how to use words to communicate properly.
I feel for all of them. I had a mentally & physically disabled daughter who died at 30. She had a twin sister who died at birth. Jessica was very sweet but could not walk. She talked a little. I know how hard it is to deal with one child like that but two I can't imagine. God bless you all. It was very touching.
I love how Luke and Matty each have their own ways of responding and connecting with others.
I don't know which one I feel more love and compassion for - mom or dad. Mom's a complete angel, and you can tell dad is ALL IN for his family... I love all four of these people. May the Lord bless them and keep them ❤
It’s beautiful how much the boys love their parents
I feel very connected to Luke, like I really wanted to understand what he was trying to communicate. I understand he is non-verbal, but felt he really had SO much he wanted to say... I hope one day he is able to do that. When I was younger I worked at a community center where we had a very special child with autism who was non-verbal and a few years later he was taught how to use a computer and type somehow, and he finally was able to express that he was trapped in his body and was able to write the most beautiful poetry about his life.. It was so incredible.
I can write much better than I speak! 😊 ppl sometimes get annoyed at my lengthy emails, texts, etc but they don't understand that I can't express that in person especially with those I do not know very well but if I am told to email them or text we'll, be prepared for a story!! Ha! 😁
I appreciate the open honesty with this family.
I've followed SBSK for a long time. These are the most caring parents I've seen. Great video.
Luke giving Chris a hug was absolutely priceless. The love of these parents is so prevalent. I appreciate their honesty. Praying for them to be strengthened as their daily and future choices present themselves.
Luke’s connection with his mom is insanely sweet ♥️♥️♥️
Luke is so much more aware and present than a lot of people probably give him credit for. When he was atiing with his dad and dad was asked to tell us about Luke, he was quiet and looked to dad and almost prompted dad to answer. He seemed to try to encourage dad to talk about him. When he got up to get the Woody, it almost seemed like he was trying to tell us about himself. He brought the Woody almost to encourage dad to tell us about Woody being his favorite and then put it back and came back and sat back down. I think he is much more present, aware, and capable of communicating for himself then it even seems.
What a beautiful, wonderful parents!❤
I have a healthy kid, he’s 13, his father never even met him. Just not interested in knowing his son. And look at this amazing dad! He loves his boys no matter what. I wish my kid had a dad like this guy.
Although Luke is not able to verbally communicate, there is so much emotion in his eyes. Matty and Luke seem like amazing humans along with their parents. 💕
There is so much love for these boys. You see the love which brings with it heartbreak too.
I’d like to give both parents a big hug. Thank you for your honesty and willingness to be vulnerable on camera. Your boys are beautiful and I’m rooting for all four of you. ❤
God Bless this Beautiful Family
I have a 40 year old Cerebral Palsy Daughter- I am 73, the terror i have that my time on this earth is coming to an end . All I hear are horror stories of these care homes.
People think your awful when you say, I wish we can go together.
Someone please find us Safe Homes for our innocent children when we pass on
Every time I've clicked on one of your videos I've been so grateful. I've grown up with an autistic brother and I feel guilty that I've not as accepting that he just has different needs. You've helped me remember to lead with love and compassion every day, for others as well as myself. You have an amazing impact on this world!
My grandson has multiple disabilities including cp. It is heartbreaking when he is in pain and we don’t understand him. He is a joy in our lives and we love him so much. Thank you for sharing.
I want to cry for this father... such a good father that looks worn down... very easy going
The mom's tidal wave analogy is such a beautiful and accurate way to describe parenting a child woth special needs. These videos have benefited me imensely because i often feel alone in my situation and feelings. I totally understand the feelings of being trapped in your situation. It feels like life made the decision for you. Its hard when you cant spontaneously make a doctor appointments or have coffee with a friend because there are limited people that can care for your child while you do so.
I'm adding that I'm so glad Chris has the means to continue these interviews. These interviews make me feel less alone and I always learn from how others are making things work despite obstacles. I could totally see this mom being a good friend and being of similar age.
I have a son with Down's syndrome and autism so I can understand some of the feelings these parents have of extreme love for their children mixed with a sadness that things can't be different. God bless this family ❤
My heart reeeeeally goes out to mom I understand exactly what she means at the end of the video when she talks about her limitations because we can only control things for so long until our own bodies and minds start to give out on us… and she has had her hands full for so long. God bless you and your family from mine to yours! ❤❤❤❤
Seen. Heard. May sound gruesome, but the feelings are completely understandable. No one will care for our loved ones as well as we can & will. Precious family ❤
I didnt expect to come home and cry my eyes out. This family is just so sweet.
The sadness when the father talked about not being able to talk and converse with his children... So relatable. My son has autism and nonverbal, and the thing that breaks my heart the most is that i probably will never get to have a conversation with him and have him tell me all about how he sees the world.
Massive Massive respect ro the mom and dad ! Lots of love to both luke and matty .
I love this families honesty. They ALL know what they are in, and are dealing with it as best as possible.
Luke is so sweet, he loves his Momma so much, she's a lovely woman... these boys have amazing parents
I appreciate the candid way the parents talked in the end and I love how the mom said that it's her choice to take care of her children day by day. There's a lot of love in this family!
Anytime I think I'm jealous of people with money and a family these videos help me realize that we are fortunate to just have properly working bodies and brains. I used to work taking care of adults with special needs, I miss it, but unfortunately the system doesn't pay the workers well.
That is very true. I have been dirt poor my entire life and have to remind myself the things I am fortunate enough to have etc. Currently live in a 1950's new moon trailer it's pretty old but at least I'm not homeless lol. I've been sober from drugs and alcohol for 9 yrs which is also a blessing. Things like that you have to think about some ppl have it much worse be thankful you were even able to wake up today the people that have died don't get the chance to wake up today. :(
@@mayanthebearthey get paid great here, a lot are lazy unfortunately where I live
Yeh I got one sibling that has atrx syndrome and he has like 5 different doctors. Doctors said he wouldn’t make it but he’s turning 21 this year 😆
You'd still be better off with more money, though
@@sliverbox271991 it’s nice to have money my brother is fortunate my family has the funds for his care however you can’t control what your child comes out with and not everyone has money to be able to give them the medical care they need.
I hope that this family qualifies for subsidized respite care. Identifying burnout is a great step. Next step is finding respite care. Having a few hours to yourself or alone as a couple is essential to surviving an intense home environment. Even if it is out of love, it still hurts when you get burnt out. Much love to your family.
This one made me cry. These parents are angels on earth. Luke is so loving and affectionate and has the most beautiful blue eyes. ❤Both boys are so handsome. So nice the church community is so supportive.
If anyone is ever having a bad day - and feeling a bit sorry for themselves - just watch one of these episodes - and feel better - knowing perhaps today wasnt as bad as we thought. Thanks Chris - you are a genuine really good guy - educating us all about life.
I couldn’t have said it better myself.
Mom and Dad, you are such wonderful and strong people. Your boys are beautiful!
I’m so glad she was honest. Caregiver burnout is real. You both are doing an amazing job. From a mom of an adult autistic mom. 💗
They are so sweet! Mom and Dad love them beyond the stars!
There is something about parents just loving on their kids. Gives me so much satisfaction to see. No matter how old they are.
The parents are to be highly commended for how well they are doing with 2 special needs boys, i know times it can be hard but after doing it for so many years you find the strength within to keep going. God gives you the strength to keep going.
It made me emotional seeing how affectionate they are and how much Luke loves his mom. ❤
What a beautiful family. The love they have for each other is so visible and heart touching. Thank you for sharing their story with us.
Both parents are brave and loving, what a cross they have to deal with. We all should never complain about anything.
Such a beautiful family, so heart-warming to witness their bond. Please God they will be together forever.
I actually felt a palpable deepening of connection with Matty during that silent period. It was beautiful.
The parents need a break!!!!!!! I hope they can get caregivers to help , they need their own life and that is ok
@@TrevorSmith-o3k well said 👏
You can sens how fragile these parents are. And what great parents they are. I wish nothing but good things to this lovely family!
Wow! Such grace and strength from these parents!
The last words are very painful,very brutal yet,very truthful.That is the right way of going for this situation,as harsh as it might sounds...No need to justify it or feel guilty,it is what it is...There is no love like good parent's love,blessed and cursed at the same time...
This dad is the most drained, exhausted, defeated looking man I’ve ever seen. The saddest eyes I’ve ever seen. Poor man.
Why the cut at the end? This was a really interesting interview, and I’d love for a follow up with the parents so they could have a platform to vent and reflect. These honest, raw, and different perspective videos like the Mark Elhert one are very thought provoking. Also, Luke looks so much like Joaquin Phoenix.
Omg he does!! ! 😮
I started watching this channel way before having kids. Now I am the mom of two special needs kids. This channel has helped so much to cope and accept and know that I’m not alone.
I have so much respect for these great parents for being so patient understanding and unconditional love for their children.
I feel terrible for the father...I can see his pain in his smile because I've felt that way for a long time, up until a year ago. Trying to make it through each day..feeling like you have to put on a smile so that other people think you are okay...I hope he can find help for himself before it gets to be too much...❤❤❤ you are a very strong man, Sir. I hope you see this wherever you are. Love from Canada
Hello. Just wanted to say that I relate to what you said. Wishing you peace, comfort and all you need. Love & hugs from NJ.
@@Tranquility32 thank you, you too 💗 keep pushing hun.
Man, I really felt for the parents at that last part. They are a beautiful family.
18:10 crazy real talk right here. She understands the grim future they face. These kids won't grow up, no light at the end of the tunnel. her life will only become more exhausting and difficult as they get older.
I wish that I could communicate my emotions so well as this momma. She has such an amazing understanding of her own feelings and others. She's the kind of person that you can meet once at the store, library, park and have a small interaction that can shape how you think and interact with yourself and people the rest of your life.
That last sentence is something I have always said myself. Until someone walks in our shoes they may not understand. That sentence comes from unconditional love and 100% devotion. God bless you both and your incredible boys ❤
9:20 when Chris asked "What do you want the world to know about Luke?" Luke's expressions, gestures and and tone of his vocalisations seemed to me like he was answering the question himself. Maybe to him, he was saying a full sentence everyone should be able to understand. And when his dad said "I don't know" it felt like Luke said "But I just told you!"
Cases like these highlight the weaknesses of today's individualistic society. We need to rebuild community, and take care of our own. I wish they had access to more support. Much, much more.
Luke is so full of joy. Both these boys are such a blessing. I wish I could get a hug from Luke. Sweet young man. These parents are blessed. 😊
I absolutely love how Luke gave both Chris and Alyssa a hug❤ ❤
Not everyone can keep a marriage together in the best circumstances. I hope you both realize what an amazing job you are doing. Not only with your kids, but with each other, and as a family.
I understand their feelings of worry for their children's long-term care. I'm 55 with several severe health issues that are getting worse, and I have an 85 year old mother who is starting to fail. But I also have a 52 year old downs syndrome brother who is also starting to have more difficulties, and I worry that I may leave prematurely. It terrifies me for him. I'm even worried that I may not make it long enough for mom. I don't want them to end up being taken care of by strangers, especially my brother. He doesn't handle change well.
We all want to be understood. Mom and dad have done such a wonderful job of providing their children with communication and respect.
15:25 I like how he included Alyssa for a hug. He's kind hearted for sure.
They are an adorable family. Wishing them all the best!
I qualify these parents, heroes and angels.... I am speechless in hearing their love and passion for their kids. May you all be blessed more than before.
Wow, this family is simply great. I feel sorry for the mom and dad, but at the same time they obviously don't let it get them down. I can't imagine having to go through what they have. All the best to all 4 of these beautiful souls 🫶🙂
Wonderful family. Love the soft spoken and calming energy of the dad. His sons are his twins. I can see his love for them. Love how Luke engaged in the interview
The parents are so strong to handle this for so long, into the sons' teens. In a very different way, I took care of my mother in her dementia years for over a decade, when I was getting older myself which had physical/mental obstacles toward the end. The mom is so articulate speaking of tidal waves. It is much more difficult when the caregiving is for the kids who may ultimately out-live the parents, which makes future decisions daunting. Bless this wonderful family.
These parents are heroes. You can feel the love in this family. It amazes me that all these kids, verbal or non-verbal warm up to Chris. It is no coincidence. Very touching video.
The ability to communicate and be understood is SO important. It makes sense that it’s calming for Luke to be understood and have his feelings heard. My son is also autistic and when he had trouble communicating, his tantrums and meltdowns were severe and destructive. He would hurt himself and break things. When he finally started to be able to communicate, it changed our world. What a wonderful thing it is that Luke here can do some ASL to be able to communicate!
That’s so brave and honest of the mom and dad for sharing their feelings about how difficult caregiving is. It is so hard. Caregivers need care too. Hugs to this family.💜💜
I have an audio processing disorder and struggle in school when I was child but grew out of it luckily by getting A’s and B grades. I got honor role in college three times a row.I was judged that I was lazy or I couldn’t read ext. that judgement made me stronger and to prove to my self i can do it. That my little story. This family is compassionate and strong. The patience incredible too. ❤️ Luke is funny and precious.