Two Kids. Two Undiagnosed Disabilities.
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- Опубліковано 23 лип 2019
- Colbie, age 8, and Lleyton, 5, have normal brains. At least, that’s according to the various MRI scans they’ve undergone throughout their short lives. No one can explain why neither child can walk, or why neither child has ever been able to speak a word. Read more: www.theatlantic.com/video/ind...
"The Unconditional" was directed by Dave Adams (wakeupthegiant.com). It is part of The Atlantic Selects, an online series of short documentaries from independent creators, curated by The Atlantic.
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Jesus loves you❤❤
God bless this family
We stopped feeding my nephew ,we fixed the spoons to his hand and assist in raising it to his mouth everyday ,until he started doing it himself and with lots of prayers
These kids have a skill issue
Can we get an update? There are others who have mentioned this mirrored something called “SYNGAP-1” I looked it up and they definitely do seem to have the same symptoms; if there’s anyway to let these parents know, maybe it could help.🤍🙏🏼
It's criminal that they can't get financial aide just because the disability is undiagnosed. Whoever is making that decision should be forced to spend one day with this family to see what they go through.
Ugh this is so true I wish more people acknowledged this hole in our medical system. I have an undiagnosed stomach condition that has made me lose jobs because I dont have a "legitimate medical excuse" aka a diagnosed condition, I just have a collection of symptoms. I agree, they should honestly send someone to physically observe the care this child needs so they can understand it.
There's ways around that. Not sure if they qualify because income but u can diagnose all the other things. The doctor can literally name it a syndrome after her name.
Also I have seen schools who offer no help until the tests are done after a certain age. I saw one hard of hearing child in kindergarten go the whole year without remedial help because they didn’t test until age 6. He wore hearing aids and He needed sign. The mother was distraught. The school failed her. Time was lost for his neural development. It was cruel.
You are very right. It’s criminal that they can’t get financial aid . Please someone help them
They need a good lawyer .... sometimes it is the only way the system will work ...it will come a time that the kids will get bigger and heavier and the parents getting older .... they need the help now !!!! 🙏🙏💕
I hate to admit it, but I'm so afraid to have kids because of stuff like this.
trust me, you get used to it. some of us have sick relatives. you get used to the small window of happiness. it is what it is. but don't let anything prevent you from being a parent
@@PHlophe That totally makes sense, thanks for that :) The beauty in these situations isn't lost on me either, its just that I naturally wouldn't want extracurricular challenges for my children that are oh-so possible in this world. But things will happen as they happen independant of my obsessive worrying. I'll remember your words.
Vinny same
It's very rare
THIS.
The sadness in the parents eyes really hit me. They are doing the best they can for their kids. Bless them!
I'm praying for you all. I know it's heart breaking and this freedom war isn't helping since they can hear all of us fighting too.... I hope the head phones and music helps block out our voices. Prayers love and thoughts
They need help.
My best friend while growing up and more like my sister now began walking on her tip toes at 9 years old. She was taken to the best doctors at Duke University all the way to Shriners. Doctors operated on her so many times, I've lost count. They removed bone, replaced bone, completely severed her heel cords, and more. Every surgery put her behind in school until she quit at 16 years old, she was in 8th grade. Her mind was and is sharper than mine but her body fought against her and noone could come up with a condition for her either. We are in our 40s now and only a few years ago did genetic testing reveal her brain doesn't produce dopamine! A tiny pill every day cured her and it took nearly 40 years to figure it out. We have walked a 5k, gone to eat and done things we could never do when we were kids, teens, young moms, etc. Please don't give up, perhaps your babies will paint the way for countless, it isn't fair but there is a reason for all things. Medicine will catch up and your prayers will be answered in God's time. In the meantime I am praying for your family and your GORGEOUS children❤💛💙
Oh my goodness, that is AMAZING! I'm so happy for your sister and you!!! Is genetic testing expensive? And does the testing cover every known diagnosis? (Sorry, I'm a bit late to the show!)
re: "there is a reason for all things"
That is a cliche platitude... totally unproven... AND is uttered to make you/the uncomfortable observer to "feel" better. Soooooooooooo trite and dismissive. Please remove it from your narrative to others. Thank you.
I hope your tip about Dopamine gets to them and is valuable. Also I just want to add that it struck me as it did you how absolutely beautiful they both are.
Oh wow...!
I'm so glad I read your post! I'm told I don't produce enough serotonin/dopamine and switch between methylphenidate and D-amphetamine salts - but one symptom you describe sounds very familiar - I grew up on tiptoe, although there're other issues. Is this related?
@@sealyonessI think so because you need dopamine to maintain posture and move properly. It's not just a mood neurotransmitter it's a lot more complex than that. That's why people with Parkinsons have movement disorders
"You were given this because you can handle it."
Yeah, that pisses me off, too. I hate when people say bs like that. Rude, privileged, disconnected, unhelpful.
Yea but their just trying to be positive even if it is unhelpful they don't mean it in a rude way. The best you can do is thank them for at least trying to be supportive and move on
Now that people know that it's unhelpful (or at least some people, anyway) I sincerely hope they stop being "helpful". Those phrases that people use to button up the turmoil and the struggle that is daily life for someone else needs to be ejected from our vocabulary. Our interactions with others could handle being injected with some human feeling. Something that lets the receiver of these empty platitudes know you're not counting the nanoseconds until you get back to your normal lives. Once you get past the platitudes, you can begin to build helpful relationships instead of useless phrases that are designed to shut the person struggling in their life up. When I get a platitude shoved at me, I have no ready responses. It makes me feel like they don't care to relate to me on a human-to-human basis.
The statement I really don't like is, "You're so strong." It isn't strength if you don't have a choice.
what else should you say to someone in that situation though?
e m The problem is that it comes across as insincere when you draw from a script. Be yourself in those situations, don’t use cliches.
If you watch children's eyes, they are very present and aware of the situation.
Professional Commenter Agree I feel like they understand a bit what’s going on, but they get frustrated that they can’t communicate
@@_epic_dyslexic_ I was thinking of a woman like that but i couldn't remember her name! Thank you!
They definitely aren't stupid, they have some kind of understanding of the things around them, but the issue is communication and I think they get frustrated within themselves.
Agree. Somebody is definitely home. They just can't figure out how to communicate. Children get frustrated, they give up easily. I think as the children grow up they will find a way to communicate to some degree.
That was something I saw right away, not to generalise but the young and elderly people I have worked with in the past seem more unaware of their surroundings, unless they can see or hear something they “like” which can be parents music etc
7:22 This clip makes me so happy. No one laughs, no one gives her strange looks. The one child who turned looked like she was worried and wanted to help. These kids are so much nicer than the kids i grew up with wow lol
in fact kids that are used to differences are so much nicer than average other kids.
I went to a very small school and everyone was great. It was the teachers who don’t make it a big issue but explain to the kids that this person needs more TLC and don’t exclude kids that need extra help and attention.
That is exactly what I observed. Your comment would be the same as yours.
It's because they're being filmed
@@sunmeg No I don't think so.
“It would be so invaluable to be in there head for just 10 minutes.” Such a beloved father.
Such a skill issue in the child
What got me the most was when the mother said, "I don't always feel like I'm a parent, I feel more like a caregiver." Prayers for this family.
@Claudia Vlahović .......What does that mean? Yes ......we are caregivers till a certain point. You obviously HAVE to be young, naive, no kids!! I can't wait till YOU grow up ......and maybe have a real heart & understanding!
@Claudia Vlahović Yes of course, but at some point generally speaking, we all grow to be autonomous. These children will never become autonomous, so they will need 24/7 care for the rest of their lives (god willing we find a cure or something).
And that’s the point where my mental health would be so thrown out the window I’d put them up for adoption. It’s either that or suicide
Parents are caregivers. And I am a disabled parent of a child who inherited my medical conditions, before that person up there jumps at me.
I think she means that you don't feel you can connect with your child. It's a horrible feeling because we are meant to connect at a deep level with our closest loved ones.
That father crying as his son crossed the finish line KILLED ME. BEAUTIFUL family.
Sandra Myers Same. Absolutely beautiful. What an amazing family. I’m surprised that none of the doctors are hesitant to name a diagnosis. Just because the genetic syndrome may not be adequately defined yet doesn’t mean there isn’t a diagnosis here. Whether it’s in the autistic spectrum or neuromuscular disorders or overlapping, it can be named (for now) to obtain the resources that will make a difference then more defined over time as the genetic syndromes are discerned. We had this happen with one of our children. His genetic syndrome wasn’t discovered until he was a teenager. So any genetic panels that had been done earlier weren’t useful for diagnosis. Just keep pushing. We are now in a Facebook group of other families who have a child with the same disorder and there are still less than 300 families worldwide. But growing as more are tested.
Me too. I lost it.
Same.
holly c ..p.p.p.p.
they're so strong
When the mom said she sometimes feels like a caregiver instead of a parent and that she just would like to hear an "i love you" I just couldn't hold it in anymore
My heart goes out to the mother and father, they seem so tired and sad
Sadness comes from the expectations ,disappointments and fear of what is “normal”. Trying to fit two very individual children into a sausage factory is in itself unsatisfactory, for the child and the parents. Children don’t come with guarantees and it is up to us grown ups to fit ourselves around their needs and that means shaking off labels that scream “normal” . So many able bodied kids who end up so damaged by parents who should never be parents, yes God does know who’s hands are safe with such beautiful and special children.❤️🙏🏻
There’s something in those kid’s eyes. You can tell they are aware, even smart. That’s what makes it so sad- that they cannot get it out.
I agree
Unlike the Hartley children, who had no clue they were even alive.
@@secretsquirrel7374 what children? Can you write their names? Can’t find them on UA-cam
@@thebluecamomile the hartley hooligans. Claire and Lola
@@secretsquirrel7374 for real. What I want to know is why those kids weren’t on feeding tubes, and didn’t have leg/hand braces? They both looked malnourished and were contorted beyond belief. Like how could that have been comfortable?!? Those girls broke my heart. At least these kids have parents that actually care.
The parents don't give themselves enough credit I think. They're not just caregivers, they're wonderful parents. The dad said that he believes that anyone would do the same, but that's just not true. Some people would just give up, even if their own biological children were the ones affected. They are wonderful parents because of how they love their children. They are wonderful because they care. A caregiver would only give care for as long as they were required to do in a day, but a parent would never stop giving that care ever, and I feel like this is what sets the two terms apart.
They look exhausted, though. That's why he's saying that. This is stress like very very few people know.
I think one reason why special-needs parents say ‘Anyone would do the same’ is that being seen as special or inspirational is actually a lonely place to be. We live a very different life from everyone else, and being treated like you’re a very different kind of person as a result makes you feel more cut off. It’s more comforting to think that you’re a normal person, and that normal people are basically good.
Luna, you are so right. These parents are amazing.
As much as they love their children, they need to mourn for the parent/child relationship that can never be. Most children grow from tiny and helpless blank slates into fully grown adults who can think, feel, and communicate on their own. Their relationship with their parents evolves as they become independent and capable people. They can form friendships with them as time goes on, share important memories, and reciprocate the care they received as children. These parents will never be able to do that, at least not in the same way that most other parents do. They probably live with the fear of what will happen to their kids when they die, or even if they themselves will outlive their children. I understand why the mom feels like just a caregiver.
It's not about CREDIT. It's about not experience anything real parents do.
Couldn’t even hold back the tears when he said, “it pisses you off…ya know?” Because YES!
The smiles from both children at the end shows how much they are loved and cared for.
I don't think this video was about undiagnosed children. It was about two outstanding parents and two beautiful children. I felt the love.♡♡♡
I believe the title implies just that. I understand them to say in this movie that they would like to have one.
Can someone call 911? My eyes have rolled out of my head.
and i think thats the problem.
Sorry thumbs way down. A diagnosis will be far more useful than a platitude about what beautiful children they have and what strong parents they are. They are strong people. Don't get me wrong. They also need practical help as well and a diagnosis will help.
This video was about more than undiagnosed children for sure, it was also about the desperation the parents are feeling unabled to help their children and feeling like a caregiver.(like the mother said) If these kids could get diagnosed then the parents would then have access to funding and be able to help their children more. This was not a 100% happy, positive video and we all should be able to admit that and not just covering it up with being able to feel the love.
That moment when the other little girl helped her clap her hands and she gave a little smile just melted my heart
She was obviously doing it for the camera and lots of adults who were standing there and spectating the girl. The girl even looked at them..
When she was left there on the floor while everyone else ran away....that was touching, too.
Jen Wombat Excelsior LMFAO U WRONG 😩
Honestly, it irritated me horribly, for the reasons @septucuss stated; It was done for attention, not care for the classmate.
Yeah...................
Dear parents, if u r watching this, I just want to tell you guys that you both are incredible!! The best parents a child can have. Hoping that the children get a diagnosis soon and sending lots of love and strength to your way!! ❤️❤️❤️✨✨✨✨
As a single mom with a child of undiagnosed this is much more difficult than my situation. So difficult to listen and watch this yet I’m compelled to.
It’s so wonderful that you’re in this together. I love you!
Just the fact that there isn't a diagnosis yet is incredibly stressful. When I found out my son had autism, just finding out was an incredible relief, because then we could begin to have a grip on it.
@@PresAdams-bz2ep Yes sir. Undiagnosed then diagnosed is a huge relief. My child was eventually diagnosed with 2 disabilities. Today I’m still his only support system yet my child is a successfully degreed professional. I still need to be available 24/7 for daily difficulties, and as a secretary fighting for insurance coverage, billing, etc. This is a life long commitment and what happens when I’m no longer here?
@@motherboard424 you are a great mother!
@@motherboard424 I think of that every day. I am trying to prepare him for an independent life. He is high functioning but very immature and gullible for his age.. I had hope that he would grow out of this, but he is now 32 and I see that he probably won't.
I also have a child with a disability. I hate when people say “God only gives you what you can handle” We don’t have a choice, I cant just sit around and cry, my baby needs me. You do what you can with the cards you are dealt. There are good days and bad days.
I hate that too!
Honesty at it's best. It's realistic. You deal with the cards you're given whether you can handle it or not or like it or not. Some parents have surrendered their disabled kids to an adoption agency and that is perfectly fine. No abuse they tried the best they could but they just weren't cut up for it and the kids will go to people who can. Anything beats taking your anger out on the child let me tell you.....
I do not like that phrase either. It demeans the real suffering and pain that people have by somehow implying that god gave it to you because it was thought you could handle it. We can handle anything for our children because we love them. it doesn't mean we love it or would ask for it again. It's tough and I'm sorry for you, like all of us in the world we suffer. It makes the Buddhist precept about suffering even more meaningful. Kind regards.
Religion not gona help... With what is written in genes...
@@fallen4055 yñ whats in our genes is sin that’s why there’s suffering in the world and why we die and life is hard
“Wherefore, as by one man sin entered into the world, and death by sin; and so death passed upon all men, for that all have sinned:”
Romans 5:12 KJV
Sins of ancestors also hurt the future generations and cause spiritual problems in their descendants lives.
The kids look so happy. They are such wonderful parents. I just wish the parents didn’t have to feel so much pain.
There is pain, pain for what would’ve, could’ve and should’ve been, pain in seeing your child struggle, pain because you feel helpless at times. But there is also magic, there is something no other lesson in life can give or teach you, and there is a love like no other.
@@squidsquid285 - Very well said. ❤️
They look very happy and the video made it seem like it was more pain and sadness. The parents look a little depressed, but it is hard! And when they smile they are so happy, they do so much
I echo that!
Mum an Dad are fulfilling these kiddies more than anyone else in the world could.
Phenomenal Couple an parents 🍀🌈💕 unfathomable journey... and absolutely gorgeous kids
I hope when the parents look back at this film they concentrate on the last 2 minutes. Their kids are physically limited but, they are beautiful, happy and well loved. Those faces say what words can never express.
What a lovely, honest couple. Sometimes life's just unfair. Broke my heart when she said she wished they could just say they loved her. Beautiful kids that I'm sure live their parents to pieces xxx
The one thing those two beautiful little ones are luckier than a lot of us are for, is those insanely incredible parents.
The mental strength of these parents is absolutly incredible and im holding out all the hope in the world that theyre able to get a diagnosis for their beautiful children. I hope somebody watching this has more of an idea!
Yeah, it's amazing what people can survive when they have no choice. Though that's sometimes more of a burden than a blessing...
I know. I am so in tears and hope, and angry all at the same time with these doctors. Please someone help them.
Although the strength of the children is perhaps more incredible - they're probably present and terrified every second
@Errin Jones no there are so many people that care for kids like that. It's disgraceful ableism to put down the children's achievements and praise the parents for loving their kids like they're meant to. People without a disability will never understand how hard it is to live with one. Those children are fully conscious, they are putting in every effort and ignored!
@@ratkid4560 ableism to praise those parents? I'm sure you didn't mean to dismiss what parents and grandparents do for differently abled children. I strongly disagree that the kids deserve all the praise. No one ever deserves all the praise.
Damn it. I was good until Dad started crying when his son crossed the finish line. Whew. My heart.
Same here...
Ugh relate. I thought I’d be good with that scene but as soon as he took off his glasses, it was a waterfall.
Tear came to my eye at the same time as well.. they just want the best for them... It's incredibly unfortunate the children have these conditions..
It's funny I started crying right before dad ... Like the whole situation...so hard
I cried 30 minutes straight. Lol
Neither parent has smiled once, can’t imagine how they can keep a relationship alive dealing with all this..
Brave parents. I would never get a second child if my first was without a diagnosis.
Exactly
Idk if I’m just seeing things but the boy looks a little further ahead than the girl? Idk
I noticed that throughout the film. He seems to be slightly more responsive than Colbie.
Of course, children learn so much more and develop so much more within the first months/years of their lives...after Colbie, they probably were able to recognize the issues earlier and get more intervention while he was still able to progress at a faster rate than her.
I thought so too!
What's further ahead ?like in functioning
sup me further in development yes
I live on the same street as this family. I drive and walk past their house everyday and always wave and smile to them if they are outside. I’ve been in the classroom that she teaches art in. I’ve never fully understood the details of their lives until seeing this video. You never know what families are going through. They are a wonderful family and I can only hope the best for them. They are amazing and loving parents. This video makes me feel truly blessed seeing that some people have thing a lot harder then you do.
Can you pass on the message from Nina Haupt she posted 1 day ago. It's on here. Her child has similar symptoms and has a diagnosis
Grace Solarz i agree with the previous comment. Can you possibly see that the other comment gets seen by the family, if at all possible. It certainly can’t hurt to check it out or even just have the information. It’s a very rare condition (like only 1 in the world - that’s known - so far she said). Might help, might not, can’t hurt anything to rule it out regardless.
Grace Solarz ....
Tell them about the other family in the comments! Even if you don't want to tell them directly, at least leave them a note or something.
Please tell them about Nina haupts comment, it’s second from the top!!
Beautiful kiddos. I feel for the parents. I have autism and as a kid in the 80s my mom and family had no idea why I did what I did I was diagnosed very late In life and I know how it feels to be unable to communicate something.
Bless your heart! My son has Aspergers. He was born in 1989. I feel your pain. People just don't understand. My son also has other " unidentified neurological issues" that cause him to lose control of his anger.
@user-xr3oo6ip4q Autistic here, level 1 but I have probably anger flare-ups when people talk down to me. I get things intellectually, but I don't intuit the social dynamics of how to proceed. So it's all cognitively driven and learned, not instinctual.
Because of tha... people have (some, not all) massively underestimated my intelligence all my life. It did not matter if I came first in class, or if I tutored in chemistry and calculus and English... I had a coworker recently call me an idiot savant and inside I was screaming.
It's horribly, horribly frustrating and irksome living in a world with so many people who are judgmental but not deep thinkers. So many revel in their ignorance but then harshly judge those with autism or massively reduce everything we do, which could be seen as advanced, and as in my case - calling me an "idiot savant." And here this woman probably grossly misconstrues the reality of being autistic and might even fancy herself superior re: emotional intelligence.
I have never been cruel to a person. Not because I lack the intellectual capacity...but because I lack the immoral nature needed to be cruel or to feel smug if I were to emotionally wound another. Because it's cruel.
And yet, being autistic can make it hard for very narrow-minded people to acknowledge your gifts. If that happens enough, it's akin to gaslighting a person. The world seems bleak then, and I struggle to not absolutely hate people sometimes because so many people are fake and two-faced. Autistic people by and large are not...we might be forthright but we generally don't smile at someone and say something in a saccharine, affected manner and then mock them behind their back.
So it might be anger issues with a very understandable cause. It could be a combination of so many aspects of living in a society that devalues and underestimates you from day one when in so many ways so many autistic people seem to show significantly more empathy and compassion and often have a greater interest in creating a fairer world, in addressing injustices, not furthering chaos and yet more injustice.
I need a break from allistic people because I can not trust most of them. So many are fake, and I know it's not all...but it's a sizable majority.
And it's depressing to live in a world like that.
I can be around other autists and generally get along swimmingly with everyone. Animals, too. Allistic people are often so cruel, though. Over time, the anger builds and the trust weakens.
I do have some allistic friends that I know are trustworthy. But I honestly have no more energy to trust others any longer.
Perhaps the issue is not another neurological issue necessarily but potentially a lifetime of being othered, and the anger, if not rage that can develop due to mean spiritedness that is so very common.
I feel so much love and respect for this family. These parents are doing a wonderful job in the midst of heartache.
These children may have "lucked out" with their lack of certain abilities but they were VERY fortunate to end up with the parents they have. They are both INCREDIBLE and obviously have a very strong relationship. I wish that every child with a special need had parents like Colbie and Leyton! I wish them all the best and hope that they eventually get a diagnosis.
Michelle Sartori Colby and Layton are the kids names not the parents as far as I know
Kerstin Nilsson I believe they meant “have parents like Colbie and Lleyton have.”
I h ope they get well and can talk amd walk
Yeah. There's no f***ing way I could do what they do. Feeling like a care giver instead of a parent. I'd rather drive off a cliff tbh.
Ralph Roberts woooowwww! I don’t think anyone would ever choose that life for themselves but especially not for their kids....but when you are put in these circumstances such as theirs and you love your kids and would literally do anything for them to include dying for them, you do exactly as they do or at least you try! This is not an attack but clearly you have no idea what it’s like to love a child you created bc you would never say that if you did.
The children may not be able to communicate but you can see the love in their eyes, every time they look at their parents.
I was thinking the same thing. The children's eyes speak the unmeasurable love they have for their parents.
Communication isn’t only verbal. Most of the communication between humans is non-verbal
everyone communicates. to say otherwise is ableism
Was touched by seeing so much love in those beautifull eyes
Yes and when they're having fun
These people are trying so hard not to fall apart. They are so brave. All the best to them...
May the Lord give you the strength and the patience you need .
this is slightly off-topic but this documentary is very well-shot
Especially the end
I thought the same thing.
yes it s bit artsy, mostly cause of the snow scenes
@@TheTinKunt best reason to watch is when it has nothing to do with you ;)
@@BucketCharlie yeah I thought it was a short film at first
All the children were sitting on the floor in a class. They got up to do something else and Colbie sat watching them walk. My heart broke.
Jean Cater and she NOTICED!!!!
Jean Cater yes I thought that should be organised better so at least someone waits with her until she is helped up.
...
why is she in school with normal kids? waste of money and time. She needs to be in daycare.
Because her assistant was getting her next area prepared. And she’s in the same class because its beneficial for her AND the other students.
I'm glad they are in a regular classroom is not only good for them but for the other kids to learn about accepting kids with disabilities. Such a great parents, doing a great job. One day at a time. I wish I was near to help so they can spend a weekend by themselves.
The smile on that beautiful little boy literally melts my heart.
She might feel more like a caregiver at times, but all I see is TWO PARENTS ACTING LIKE PARENTS!! You guys are doing exactly what a normal parent would!
Sa Sha Me, Ah Sha You amen
But that's what a parent does. Gives care. Should do. Not all do
What Normal parents do! Not all parents!
Chris from SBSK needs to come and see these guys they deserve the world and more blessings to them
Yes! SBSK is great. There are some really uninformed people commenting about these children, who could very much benefit from watching Chris' videos. Special Books By Special Kids is their UA-cam page, and they are on Facebook as well. You have to go to the Facebook page to comment on the videos, as UA-cam took their comment section away. Just because they remove comments from anything with "Kids" in the title, no matter the content.
_Gravy_ I totally agree with you.
yes!!
Omg YES! That is such a great idea!
Jeannie honestly so dumb. The gymnasts(children) I watch got their comments disabled as well as a hair channel I watch that sometimes films with her children. It’s crazy
As a mother of a disabled son, I understand all their feelings. At some point the sadness of seeing your child struggling with everyday activities, and your dreams of what could have been has to become joy in the journey. As a couple, acknowledge the situation and decide to be happy, enjoy your kids just as they are. Help them develop to their potential, sure, but also just love them and play with them and enjoy each other. It's not easy, I know, but a simple and loving life is better than a struggle to find out the diagnosis, doctors visits, lab tests, consultations etc. In the end, in my case, I just decided to forget about the diagnosis and just hang out with my kid and love him and live.
The blue-grey of winter seems appropriate to the mood of the documentary.
The swimming instructor is so lovely with Leyton. When she said, "Head down, head down -- you know how to do this," and then he did it and she was so genuinely happy and so was he ... pure joy. @19:40
I cried at that scene, because you could tell that swimming instructor loves what she does! Lleyton is very smart too!
She is one good person!!
I cried to. See the father so happy, because his son is happy.....
This made me tear up it was so sweet. Then the dads smile 🥺💖💖
When the mother said she felt like a good amount of the time she was soothing her daughter with her headphones vs actually addressing the issue really stuck out to me... That's got to be painful knowing you don't know what the problem is and likely can never know.
Marie Wood very painful 😔it makes your soul hurt, your whole everything hurt 💔
It was saddening to see her whine and grunt without really knowing what was causing her to suffer
And then when she said she doesn't feel like a parent...more like a caregiver...so heartbreaking!!!
What beautiful children!!! They both are responding to therapy and using the tools so blessed to have in this day.
So proud of what they have accomplished so far with the support of two wonderful parents. Thank you for sharing your story.
There needs to be funding (and more support in general) for folks in situations like this. They shouldn't not qualify just because doctors can't pin down an exact diagnosis. That's ridiculous!
JFM So everyone else's kids who are normal should receive less money for their educations in school, so that two genetically damaged children can get more? You bleeding heart liberals are disgusting.
@@StoicObserverS Well.. Yes! Are you that selfish!? These kids should get funding so they can find a diagnosis! These kids need help. And you don't because you probably don't have a unknown undiagnosed disorder. You make me sick. You are so focused on political parties that you can't see that these parents need help! And before you call me a liberal, I'm not someone who identifies with political parties. I vote for whoever I see fit.
@@StoicObserverS kind of hilarious that you've named yourself stoic observer but failed to be either.
@Stoic Observer You are a douchbag.
@@StoicObserverS seriously God help you never have to go though this. You're a cold heartless person.
I knew exactly what she was going to say when she spoke about being a caregiver. My heart aches for their family.
These parents are angels
I too, hate it when people say “well, you were chosen because you are strong enough to deal with...” It drives me nuts!!!
Yep, or for me when people say
'God bless them', ' god will see you through etc' I'm sorry if god were real why would he/she do this to young children. ( I'm not dissing anyone faith, I'm just not a believer , but sh#t like this can happen)
i totally agree. no god would want kids to be like this. just wish their was a better way for kids to not have to live like this,
@@stillirise9705 my daughter is special needs. Fortunately she can walk and talk and tell me she loves me but I like this family have spent a lot of time btwn doctors and hospitals and now we have in this recent year been dealing with much more critical medical issues than she had her whole life last 8 years leading up to this but all of our experiences and her abilities to feel deep into other people's hearts and inner feelings has absolutely transformed me and brought me to a love of the truth and I am now not just some believer but someone who absolutely knows the truth about the one true Creator of all. This world is not an accident and neither are these or any children. The love of my child is a huge part of what has revealed these truths to me and I pray you may come to find them in your life as well. Aloha💓
The Crucifixion
…27A great number of people followed Him, including women who kept mourning and wailing for Him. 28ButJesus turned to them and said,“Daughters of Jerusalem, do not weepfor Me, but weep for yourselves and foryour children. 29Look, the days are coming when people will say, ‘Blessed are the barren women, the wombs that never bore, and breasts that never nursed.’… 30At that time‘they will say to the mountains, “Fall onus!” and to the hills, “Cover us!”’ 31For if men do these things while the tree is green, what will happen when it is dry?”…
@@dulcelatina214 rather batty innit?
These parents seem so depressed and down and it just breaks my heart
Christina Shoe extremely challenging parenting. My heart goes out to them. Such a very difficult job... which will never end. It must be so very hard.
Their children can sense that and it isn't helping them at all.
Can you imagine if you could 've coped?! They are tired but they are not giving up...I pray they continue with the good work they are doing as parents of these wonderful kids💔💕💕
@@Makkaru112 What IS helping?
seeing the struggle these kids have with things we do daily makes me so sad. I cried the whole time because I just want to give them all hugs and somehow communicate to them how much their parents love them.
No child should be left behind.....no matter what!
Our government needs to be assisting any child, including special needs children, to have the upmost opportunity to have the fullest life available by our modern sciences' efforts.....regardless!
I highly respect these dedicated parents sticking together & giving their children, their love for each other & their unconditional love ALL children, deserve.
They're true heroes ❤️.
HUGS2U ❤️
It seems odd, but I can see parts of them from their eyes and emotion.
They ARE there in there, but they can't show it like normal children in their age group. But its there. The love and excitement and happiness.
Kids with disiblities are still normal were just a bit more amazing than normal
That sound even worse. Self aware and intelligent but no way to show or communicate it. Fuck that I’d rather be brain dead
As well as fear, whenever colbie wakes up she looks so afraid... she might be experiencing night terrors or something like that
Normal wasn't a good choice of words. But I know what you mean
Alyssa Black I hope you get your wish! What a terrible thing to say! Wtf....are you?? They're HAPPY KIDS and they're LEARNING... UNLIKE YOU it's too late for that. You wouldn't know! Your brain dead!.... they're in no way YOUR problem!! GTFO!!
the cinematography in this documentary is just breathtaking. those final closing shots are mesmerizing. they perfectly captured every bit of wonder and joy in lleyton and colbie’s eyes, brought tears to my own.
Ikr? The cinematography captured me from the first minute in. This guy deserves more job opportunities
they did im weeping 😭😭😭 they paid those kids so much service when they showed us how the world may look through their eyes
You have a way with words! 😊
One year the Special Olympics came to Ireland. The children and parents were so brave and full of spirit.Whole villages came to see a local child walk two steps. So much cheering and crying from people who had no one involved but we were all struck by the joy that the event brought.
Agree awesomley done.
I just found your channel today. As soon as I start watching your story my heart was touched and I did an intercession prayer for your beautiful babies and you guys. You are excellent parents. Don't stop believing. You are an example of persistent, perseverance and love. They are a gift and they have a wonderful loving parents. Good job! 🕊️🙏 ♥️ God Only Knows: From King and Country 🎶
I can’t even imagine how exhausted these parents are. I’m sure there are plenty of not so pretty moments but they are incredible parents. It takes tremendous strength to walk in their shoes and these children are very very lucky to have such loving parents who are fighting for their children.
I have nothing to say except that I wish the best for everyone in this family.
I'm heartbroken. Two children like this. God help.
it's like you know they can tell something that's going on they just don't know how to say it two beautiful children wonderful parents
I can't imagine how frustrated the parents must feel knowing these kids are so intelligent but still can't communicate and I'm sure it's even more frustrating for the kids
What makes you think they're so intelligent? The definition of intelligence is the ability to aquire and apply knowledge and skills. Something it seems they may be lacking but so what. Doesn't mean they should love them any less. Not everyone is intelligent.
@Janel Watson Well let's see can they read, or use basic math? Can they write and have proper spelling?How would they score on the standardized testing the rest of the children their age take? How are their problem solving skills? My point was it doesn't matter if they are intelligent, and no need to pretend when someone has an intellectual disability.
@@83reggieT I have to say the contradictions between your two comments is almost comical. However, you’re missing the reality of this situation. This children have a physical disability. Plain and simple. We don’t know what that disability is exactly, but if you actually watched the video it was stated that both of the children had typical brain structure. As far as we know they have learned everything their peers have. The only difference? These children can’t communicate the way “normal” people do. You can watch these children follow directions and respond appropriately to people and stimulus. This shows the children are very alert and aware of their surroundings. These kids probably have way more problem solving skills than any adult purely from the fact they have to get their wants and needs met despite not being able to control their body or communicate. I can guarantee if you were to be in the same position as those children even for a day you would have a whole new perspective on what intelligence really means. So for you to write off these children as unintelligent because they aren’t an exact carbon copy of you and require a different method of communication is ignorant.
Those children give every indication of being approximately as intelligent as a house plant. Why do people fantasize this quality onto children that cannot even maintain eye contact or understand simple speech? They are probably the developmental age of a new born. Their lives are a tragedy, the stuff of night terrors, and a savage and infinite act of cruelty against their parents.
The cinematography, the editing, the score! This is gorgeous
I'm in awe at the strength of these parents. They're so caring, dedicated, productive. You can see in the childrens' eyes, they are loved and well cared for. I hope that a diagnosis is found soon and they can find a communication method that works for each child. It looks like the eye gaze device is working for Lleyton, that's a great sign.
My son was born with a disability, very similar to this. A doctor from Ottawa Ontario, found the diagnosis through bloodwork 2 years ago. My son suffers from "Doublecortin sydrome", which is a mutation in the DCX gene, which delays speech, walking, constant congested sinusses, eats too much too fast, temper tantrums, involuntary rapid gestures and unable to perform regular bathroom habits. Our son Landyn, failed the sleep test. However, his MRI results, revealed they grey matter was 1.5 x the normal size, along with a smoother brain surface, unlike the wavy "noodle-like" pattern. My wife and I, both feel 110% the sams as this couple. 😪 We also have a 3 year old daughter, who has already exceeded her milestones. 👍 I'm Jonathan, from northern Ontario Canada.
I am so sorry that you are dealing with that. I can’t even begin to imagine.
I initially thought it could be something like a “Benjamin button” disease.
As a Mother with 2 healthy sons, I can't begin to imagine your life. My heart breaks for all of you. I feel useless to help. God has granted you strength, endurance, patience, love and courage beyond articulating. Well done Mama and Daddy, one day God will tell you both "Job Well Done"! All my best wishes and prayers😍🙏
@@YukiLuvsJesus that doesn't because that would mean regression as they age and the mother already started the kids haven't regressed just develop extremely slow.
@@shemeciahaskell322 Benjamin button disease most of the time doesn't cause you to age backwards just age slowly with some people physically and cosmetically but it could also be neurological leading to some of these symtoms.
Could you imagine if these babies had been born into a family without such compassion, understanding and unconditional love? What a terribly heartbreaking existence that would be.
This documentary was both beautifully and eloquently made. Thank you for bringing us along on your journey.
They'd be buried in the backyard.
Charlie Brown-McElroy ❤️🙌🙏
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Boy you can see the love this Family has reflected In they’re Children’s’ eyes.
"They are children is eyes"
They're such beautiful, strong and brave children. You can tell they're aware, so smart and trying their hardest. Those parents are also amazing for raising them, helping them out, and doing all and everything they can for them! This is so beautiful to see but also heart breaking because you can tell they're very bright and wanting to communicate and do things but just can't. Sending all my love and prayers to this family!! 🖤🖤🖤
I am wondering if the parents have looked into SPG47 (Spastic Paraplegia 47) which causes mutations of the AP4B1 gene. It is a neuro-degenerative disease with only 11 cases in the US as of 2016. Symptoms include impaired/absent speech, hypotonia that develops into hypertonia, dystonia, ataxia, spasticity of the legs that leads to the inability to walk, intellectual disability, a "floppy" appearance due to low muscle tone. Because it is an autosomal recessive inherited disorder, parents carrying a mutated gene have a 25% chance of having an affected child.
I know a girl who has SPG47 and Colbie and Lleyton reminded me exactly of this girl. Not only are their symptoms are nearly identical, even their self-soothing methods, body language, and facial expressions reminded me instantly of this girl.
In addition, there are four other known disorders affecting the AP-4 gene that present with very similar symptoms, they are: SPG50 (AP4M1), SPG51 (AP4E1) & SPG52 (AP4S1)
Very interesting, I hope they read your comment.
I hope they have found answers as well.
Underrated comment that needs to be seen
UP^
This comment should be pinned
I hope these parents are in therapy for themselves. God bless them, it really takes a warrior to be able to manage all of this.
starkieable i hope so too i bet they are just exhausted wish their was something more we could do for them
They have two wonderful children & are very blessed. It broke my heart when the mom broke down & wished her children could say I love you. I wonder if they've thought about adopting a 3rd child so they can also experience what they are yearning for. They are really amazing parents.
I wish I didn’t watch this. This was my life too (until 2 months ago). My son is severely autistic, completely non-verbal with many medical conditions. I nodded to so much of what they were saying. After 13 years, I lost who I was and couldn’t cope anymore. I didn’t feel like his mum, I felt more like a 24/7 carer. So many therapists, teacher, education assistants, appointments, doctor, paediatrician, medications, carer, multi-agency meetings, endless sleepless nights etc. Rather than put my son into full-time care, thankfully his dad and brothers are doing their best to care for him. I am very grateful and proud of them. I feel immense guilt and grief. It’s a tough job. My heart goes out to this beautiful family.
Vaccinated?
Whats amazing about the girl is her love of the music, and how it calms her.😊
And I complain how difficult being a mom sometimes is, feeling ashamed.
don't feel bad. All children can be difficult. They are going through the motions of caregivers. You are going through the motions of an active moving talking back child. It can be overwhelming and exhausting. Do not sell yourself short. Being a mom is difficult. Keep at it the rewards out way the heartache!!
Being mum is still a difficult task. I couldn't imagine myself looking after a child.
@@viveannejoh beautifully said
Honey I said the same thing! I’m so ashamed for getting upset with my adhd son and getting frustrated mainly bc I’m a single mom with my own disorder, idk what is so without the love And support of those in my life. It really does make you fill up with gratitude for every single thing.
It's not a competition. You're allowed to feel how difficult it is for you, and it doesn't take anything away from them. Please don't be ashamed. Be gentle with yourself :)
It's like they want to talk so badly but can't. So they settle for the noises they make 😣😔😔😔
They don't settle
I thought so too, especially Colbie. She seems to be trying to communicate when she vocalizes. It must be so terribly frustrating. It's amazing what families can do for each other. The dedication of the parents is really wonderful, and I feel for them and their struggle.
I'm autistic and on occasion make similar noises not for communication purposes but to block out uncomfortable sensory input.
It really seems like their brain is frozen at 8 months of development or something. These parents are doing such a great job, the kids seem very happy
@@busygardenmama I don't see, that their intellect stocked, it seems to be physical.
This is my second time watching this video, and I’m still moved to tears. I love these parents and their children. Their story teaches us so much about love, courage, persistence and trust. I would my give them a huge hug if I could, and I’d tell them they give me hope.
2 Parents staying and working together are making a tremendous difference in your children. Please continue to work together. You're certainly making a remarkable difference in their lives. They are so smart in their own unique ways because of the unity of care you're both giving them. Not focusing on their disabilities but on helping them grow and achieve to the best of their potential. May God bless and strengthen you both in your journeys as a family and may He reward you with the blessings you're hoping to achieve.
Lots of parents neglect and abuse their children for having a disability, these two parents are a perfect example of what ANY parent should aim for.
That brakes my heart that people do that I'm so happy my parents aren't one of them I couldnt even imagine if my parents abused me for the one thing that makes me amazing
It's really wrong that the kids must have a diagnosis, funding should be based on need/s. Amazing parents, I wish them all well.
I understand, but I think with a diagnosis you might know some progression. Are they going to live long or die early? Does it get better or just worse? Are they ever gonna walk or talk?
@@yvonnewinters9699 main reason its required is just so they know you arent faking. It's also why many people become the first of their diagnosis. Because they dont know but they clearly have something going on.
But it's also like - these kids clearly aren't faking. Whether or not they have a diagnosis is irrelevant - it won't suddenly make them more in need. They should get all the funding they need. Diagnosis is also unreliable. See, observe, then fund. To each according to their need, not their ability to be diagnosed.
Diagnoses is getting much harder these days.
It is not wrong - in fact when u know there is a diagnosis - even if it will not bring any healing - it somehow reassuring and to know that this thing has a name. It gives some peace to parents.
My nephew has hypotonia and cannot speak at all, but babbles at 3 and and a half. He was born tongue tied, had trouble latching and cannot feed very well. He is only just managing to walk a few steps at a time holding on to something before flopping down. He does not actively communicate and does not respond to his name regularly. But he is very interested in intricate mechanical objects and is well adjusted. His development is very slow, but he seems determined and socially perceptive. His diagnosis is that he suffered a little brain damage sometime close to or while being born. He sees a speech, physio and occupational therapist weekly. I love him so much and hope he continues to grow into the best version of himself.
This was enlightening to watch to see that there are other kids like my nephew and to understand what their parents think and do.
Wish this family the best.
It is easy to criticize and "they should have done ....whatever". Until you are in their shoes, you have no clue what they are all going through or how difficult life is for them and the financial resources needed. My heart goes out to parents who have children that are disabled, in one way or another or severly disabled. My children are normal and am thankful to God for this, everyday, as you know things can always change in 1 second - one car accident, one fall, virus. I see they are amazing caring parents who have seen the dreams for their children disappear.
I have autism and I couldn’t talk in till I was like 6 and and I would yell and scream cause no one could understand me but I had speech therapy and I can talk so much better I always did things late. At 16 I finally learnt to to my own shoe laces and I’m so happy about that cause it was hard for me. I’m now 19 trying to be more independent and cook but I’m bit lazy and feel like I have no energy I have depression also so everything feels way to much and exhausting but I’m trying to live a normal life. Life with disabilities is hard for the parents and the kids and for people who care and love them. But it’s no always hard there’s always good times and bad times
Keep going you are amazing
Respect, man. I have high-functioning autism. Stay strong.
I have high functioning autism. Being a teenager was the worst time of my life because of all the hormones being out of wack! I still struggle with depression too, but it's getting much easier to overcome. As long as you keep trying to improve yourself and let yourself feel proud of every accomplishment (no matter how small it may seem to you or anyone else) it will help you become stronger than the depression so you can overcome it little by little. You're a very strong person for keeping up the fight despite everything that tries to hold you back!
Amy Lamb thankyou for sharing Amy 🙏💗
God bless you,.
These two parents, I hope to Christ they can keep it together somehow
I know videos like this are when parents put on their public masks, but they genuinely seem like perfect people for the job. They displayed all the right qualities from patience to not letting ego get in the way etc. Those are the luckiest kids in the world for being born under those two, honestly. It would probably wrench your heart out to know how many people wouldve just given them up for adoption at the first signs of disability.
What an unhelpful comment. Even if god existed. Isn't this god the reason they're in this situation?
@@vinny5638 I can't say I agree. There are thousands, if not more, who are dedicated to raising their children under challenging circumstances, like disability. The father mentioned how people say comments like this to him and this would basically piss him off and I don't blame. I really feel for what comes across as a sense of isolation and frustration that they can't communicate in a way where they and the children can bound. Isolation can be a real emotion when you are dealing with long term hardships. They don't even have some tangible recognition in the form of a diagnosis from the medical community. I wouldn't wish this on anyone. I really felt for their situation, which isn't really going to help them. Maybe a medical specialist may see this and maybe be able to offer some assistance.
@@AllIsWellaus Its naieve to disagree. For every angel parent there's a dozen abusive drug addicts who would give them up without a moments notice and miss no sleep from it. And that's a fucking tragedy. You have to be aware of the monsterous activity humans are capable of in order to produce more angel parents to fight the good fight. Its awareness. So I dont care if you disagree or if these kind of comments piss off some uptight parent, its reality. There isn't an emotional appeal or an argument in the book to dispute it either.
You imaginary friend can't do anything to help them. I hope doctors and medical science can help.
Beautiful kids. Beautiful parents.
Your children know that they are so loved and that's the most important thing we need in this world! You both rock!!!!
This is probably neither here nor there, but that is one hell of a husband and wife team. That's love. Supporting each other, working together, loving their kids and being a family.
Absolutely!! They're amazing together. The love they have is palpable.
Omg i just started crying when they put the headphones on. The power of music is so....real and important.
i think they're noise cancelling headphones
They say in the doc it is classical music
music makes you dumb
@@ploopybear Yeah, I think you listened to too much music
Amazing family I’m crying and also this was filmed so beautifully
I was reading through these comments and I got a very bad feeling when I read something like "that's why I don't want children, I wouldn't be prepared for this situation". To those: Have you thought for a moment how it feels for the parents in this documentary to read these comments. They show their life and get these responses. No need to mention this here. For me these parents are heroes, because they get up even in the hardest moments and never seem to stop loving, thats wonderful and their children are beautiful. I think nobody is prepared for this as we aren't prepared for any other hard situation that life might throw at us having children or not. You choose if you want to live based on fear or based on love.
To be completely honest, this is one of the reasons I don’t want kids. Not because that I discriminate against those with disabilities at all. But because I’m afraid that I won’t be equipped enough to truly help and nurture them in the most right, loving way. I’m scared I won’t be the best parent to them
That’s a completely valid reason!! But if ur scared of passing down disabilities I suggest (if u can afford it bc it can be pricey depending where u live) getting a professional genetic testing done
@@sillyguy444 adoption would be an amazing option too
Anyone is either very brave or very stupid to bring a child into this world as it is burning and turning now. Adopt, adopt, adopt!
Exactly how I feel about having kids. I don’t know if I’d be equipped to handle a disabled child, having my own problems. I simply don’t want to raise a child if I can’t do it in the best way possible.
I feel like people who have this fear are really kind and caring. Think about it, awful parents don't think of this too much, they dont question their parenting. I think it comes from a place of deep empathy and understanding of what it is to bring another human into this world. I understand your reason completely though but I don't think anyone can possibly be a perfect parent, as humans we make mistakes but the important part is to acknowledge and rectify it the best you can. Not trying to convince you to have kids or anything but just saying you're probably a very lovely person for this! I wish not having kids was a bit more normalized too, its okay to not want that and lets be honest... the world may be a better place if more people had this fear.
When she pressed the button for bubbles my heart melted she has a beautiful smile x
Those parents are angels with a great deal of patience. Hope they get a diagnosis soon & help they need x
That was my favorite too
Mum and Dad you are both exceptional
The dedication of these parents is hard to imagine.
The raw emotions that I feel after watching this flood my heart with so much love and respect these parents.
I accidentally found this story and am so glad it did.
There were so many times that I wanted to walk through the screen and tell these parents how much I love them.
And yes, I hope for the day that you’ll hear them say,” I love you mom and dad”. Sending lots of my love to you from The Bay Area.
They're both such good parents. The children are clearly very well taken care of, and looked after, and deeply loved. I hope they get their diagnosis.
Bump
I agree 1000%, & who knows what their future will look like, they may eventually start to say words, or walk, its all about building that muscle memory. I've seen it with my own sister!!! The best day of my moms life she says is when my sister started to mimic her and eventually said yes and then no, and now she speaks TWO languages!! We are a bigger family, so I don't know if that played a role, but I pray the parents get answers about their kids.
It's okay to be upset, sad, angry, resentful, frustrated, etc. The parents are humans dealing with an unimaginable situation doing their absolute best and can I just say, they're doing extraordinarily amazing.
Huge respect for the parents.
You are amazing parents. Never forget that! your dedication is enormous!
I don't know if someone has already pointed this out, but the boy's condition is much less severe.
I noticed that too
I used to look after a girl that could only lie in her chair and make noises due to brain damage, even though she couldn't speak or really move, we used to have conversations, you "tune in" after a while and learn to communicate. You may never get "I love you" but they'll say it in their language.
I love you are just the last honest words. Body language says enough.
Agreed! It was once my job to go into the homes of very sick kids on life support (on ventilators, required constant supervision and nursing interventions).
The parents were often my heroes. They’d been well-trained and were able to perform any number of emergency interventions. I remember days I clocked out and went home exhausted. The parents didn’t clock out. Ever. That takes something special and I know the parents don’t like to hear this, but they are so often quite amazing and strong.
I’d put the pair in this video towards the top of my list of great parents in the face of adversity.
@@oOIIIMIIIOo I can understand that the mother urges to get an I Love You in her language, so to say.
so heartbreaking. Thanks for sharing
Idk why but your sentence at the end made me tear up
He is the best dad in the whole world!
this was the most beautiful documentary I've ever seen. Thank you to Dave Adams for the beautiful cinemetography
the poor dad just sobbing when Lleyton was doing the race. oh my heart 😢
smacgregor717 Please don’t imply I am being heartless or not. Please, but I really do think because of this Documentary. The father could be letting out more of his emotion on the Documentary more the we would without the cameras.
@@pennyjack2 do you have children?
smacgregor717 A one and a half year old boy? Why?
@@pennyjack2 I was just wondering if you could possibly understand what it was like to see your child like that. As a parent myself I feel like his reaction is 100% genuine
smacgregor717 I don’t know, maybe. But I don’t deal with Empathy very well. I’m not being heartless is this I don’t feel it as most do. It’s Part of my autism I guess.