Two Children with Undiagnosed Disabilities | The Unconditional | Real Stories Original
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- Опубліковано 12 чер 2020
- An unflinching look into the lives of two undiagnosed special needs kids and their parents as they grow older with no answers in sight
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These parents are doing their best, I just wish they felt like parents. Their kids obviously love them and seem happy in my opinion at least.
It’s sad but I understand why they feel that way.
The children are beautiful
They look exhausted. It is a difficult job for them.
The kids seem very distraught a lot of the time, in my view. The sounds that the daughter was making when she woke up was heartbreaking 💔. She was so distressed, it would break my heart to hear my child wake up so distressed every day.
I’m not taking anything away from these amazing parents who are doing a job that’s so hard, it’s unimaginable.
The little girl seems more responsive . The little boy has a lot of aggression in his eyes. He is tortured. I would say he is worse than she is. Maybe the hard work of their parents has achieved some progress, in time.
This woman is more of a ‘mother’ than anyone I’ve ever seen
In many ways this hardship they endure makes them better people than most.
So you haven't seen much.
But with none of the joys, none of typical experiences of parenthood, of guiding your child to greater Independence. There will be no arguments, but nor will there be any meaningful conversations, no discussing the great lessons of growing up, no comforting a teen whose heart has been broken. There will only be endless and soul crushing caregiving. And that is a truth full of sadness
@@jennydawson6952 Wrong, next time you meet a parent of a severely disabled child, say what you have just said here to them. You might learn a very valuable lesson. This woman isn't typical of all parents of disabled children. Most of them would blow your mind.
@@jennydawson6952 there absolutely are still joys! I am severely disabled, due to a degenerative terminal syndrome that has been progressing since my birth. My twin sister has the same condition too. She has far more brain involvement though, leading to severe brain damage and autism, meaning she is non verbal and is actually oddly similar to the little girl in the video. as I have mild autism (well, it is mild now due to all my intensive therapies, I was off in my own world until I was 5 or 6. I learnt to speak at 6, in a way. I could copy words or phrases, like how people quote movies or lyrics. But I couldn't spontaneously say my own words or phrases, just copy ones that best fit the situation. So, I would quote what is said at the end of my favourite TV show, which I meant as something like 'I'm finished with this activity, I want to stop now'. But as you can tell, I learnt how to fully communicate eventually. Sorry for the rambling diversion. Anyway, back to my point, that there absolutely still is joy, even for serious conditions that haven't been diagnosed yet, or is terminal. Often, those experiences actually mean that you end up really appreciating the small things even more. A disabled kid making even the smallest bit of progress, feels like they won a marathon! Or, if the kid has been having a bad few days or weeks, having a day where they're giving out smiles to everyone, and are all huggy and happy, is one of the best feelings ever !!
However I do know that things are very different in the US. Where I live, my family has always had caregivers and nurses to look after me and my twin. My parents were able to 'just ' be parents, without having to burn themselves out by trying to be our parent, doctor, nurse, teacher, all-in one. My siblings never got neglected, my parents were able to give us equal attention and my siblings never had to take on extra chores or 'grow up too early'. My family never had to have any kind of financial burden either. My parents never had/have to worry about what happens to us after they die, my siblings never have to be forced to care for us later in life. I'm waiting for repairs to be done, then I'll be able to move out and live on my own ( with caregivers), all this support means I'm able to be independent. My family didn't have to suffer just because they happened to have severely disabled kids. Everything was/is provided - caregivers, nurses, medical equipment, wheelchairs, specialist tube feeds/IV infusions, even an adapted car through a scheme that provides them to the disabled/family of the disabled person if they can't drive themselves. The scheme covered all the pretty significant adaptations I need so I can drive from my wheelchair, despite the fact that I have virtually no muscles left. The only thing that we have to pay for, is the fuel to drive to appointments and paying for parking in the hospital (and there are schemes that help people pay those costs or provide a medical taxi etc). Even just imagining the bill we'd have to pay just for all our appointments and hospital treatments if we were in the US, is terrifying.
So, all that to say, it's a lot easier to have a happy, carefree 'normal' life while having disabled kids, if you live in a country that provides everything you need and doesn't expect the parents to absolutely burn themselves out being full time caregivers. When you have external help from caregivers and nurses, the parents are free to just be parents and play with their kids, make memories. Their money isn't being drained to pay medical expenses, so the family is able to save up for fun activities, vacations/holidays away, normal family stuff. When I see videos about disabled folks in the US, it's just so different to over here. Disabled is seen as such a catastrophic thing, but it's not because of the disability inherently, it's because the government doesn't actually take care of their citizens how they should! I hope this makes sense, I fully understand how this family would struggle to have 'good times', if they don't have all of the help and benefits that we have over here. They are forced to constantly live in survival mode, no one can thrive if you're just surviving
Very angry that the kids don’t get any type of funding to help with care simply because doctors can’t/won’t diagnosis them. That’s a cruel paradox. I can see the pain in both parents’ faces. I hope one day they will hear ‘I love you’ from their kids.
Amanda Jones it’s not that they won’t they probably just can’t tell what it is.....you have to sign up for social security benefits
There's plenty of funding that isn't reliant on a diagnosis. DDA services are based on level of need not a specific diagnosis and, depending on location, DDA provides a LOT of services/funding. There are charities that provide assistance without needing a specific diagnosis as well. You can even get SSI without a diagnosis. Of course, most of these resources are for low income families and both the parents in this story are government employees so they likely don't qualify for most assistance due to income.
Very sad, hope you get answers soon..
She didn't say they get no funding, just specific types.
The problem is the government only funds major diseases or conditions that affect a majority of Americans. So funding for things like these is almost non existent
They are incredible parents. And yes, they are most definitely parents. I hope the Mom can see that.
Amen.
InstaBlaster.
yeah, parents until their last days. These kids will not be independent, at that rate.....ever. Not a happy prospect.
Again, what’s the point of any of this? They should be placed somewhere safe and not inflicted onto the other kids. Huge responsibility as long as they live. Which probably won’t be a normal life span.
It was sweet to watch Colbie's classmates interact with her. Pausing with the penguin and helping her clap, like they couldn't bare to see her excluded in even a small way, at an age when kids can be ruthless to each other. They're blessed to have her, likely to grow up with more empathy than most. Those with special needs are here to teach us, not the other way around.
My thoughts exactly
I fully agree!! As a teacher, THAT is how a full-lnclusion classroom should look. She was treated just like everyone else, her supports weren’t seen as foregin but just a detail of Colbie. I adore this gen alpha generation, they’re gonna change lives more than anyone thinks ❤️
This is EXACTLY what our family lived for 7 years!!! I knew the moment I laid eyes on my youngest that something wasn't right, but NOBODY knew what it was. He has a bicuspid aortic valve, hypotonia, dysphagia, positional club foot, motor delay, intellectual delay, feeding problems, a stricture in the esphagus, leg braces, gait trainers, TheraTogs, serial casting, amblyopia, sleep apnea, throat surgery, didn't walk until he was 4 and still doesn't talk at 8. Lots of symptoms, but no diagnosis until April 11, 2019.
The answer was an extremely rare, newly discovered (2014) neurodevelopmental disorder called Xia-Gibbs Syndrome. It's so new it doesn't even have it's own diagnosis code like other syndromes. Just like with these kids in the video XGS is only found on the AHDC1 gene on Chromosome 1, but each patient has their own presentation of it. For example, my son is missing two of the ten nitrogenous bases on the AHDC1 gene, while another patient might be missing the gene ENTIRELY.
At present, my son is the only one to be diagnosed with Xia-Gibbs Syndrome in the state of Colorado. Just this past March (2020) we had the pleasure of meeting other XG families and hearing their stories. It was life-altering to see another child just like mine.
Wow!! Your story really touched my heart. You and your child sound like true warriors. I can't even begin to fathom what you've been through, and how it feels. I'm positive your son is very blessed to have you as his mom. Glad you both got to meet others with the same condition. I kno that was probably something you guys never dreamt was possible. Sending positive thoughts and love!!
@@kristenjustkristen9462 Thank you, Kristen. You are very kind.
facebook.com/JaxonEvander/
I'm one of those people who selects something to watch, then after 2-3 mins stop video and reads comments.
My heart goes out to you, your child and family.
I was thinking about the short snippet I'd just seen here but reading your comment I felt so overwhelmed and speechless. I just wanted to reach out to you, but can't think of anything meaningful to say except
may Almighty God's Peace fall on you and your family and may He make His presence known to you especially during the darkest hours.
God bless you and your precious son!💕
You aren't alone plus there are parents with similar genetic problems with their kids that present like your child. There needs to be a website for people to join for Xia-Gibbs and similar problems. Some kids have mercury poisoning and it also causes delays.
I absolutley understand how pissednit it makes you when ppl say "you were given this special child cuz you can handle it." Its a b.s. cop out response. I just want ppl to say how can I help, help me understand the best I can. This must be so hard for you. And for them to say see the child not the disability.
Unfortunately that seems far too hard for the majority of people all they ever focus on is the disability. I know I grew up with a brother who has down syndrome in a time when it was not common for parents to keep them. The Dr's would advise the parents to put them in a home for the disabled because they'd never amount to anything.
Im a mum in uk of a disabled child, blind, wheelchair bound, non verbal. I used to hate that saying i had my son at 16 years old. If we only get what we can handle why do more often then not at my so s school anyway the severely disabled kids are looked after children meaning theyve been given up or removed from there parents and looked after by foster families and the courts. If that saying was true then that wouldn't be the case.
Also ive watched this before its a re upload which is annoying
@HollyApple777 Thats why I left a general idea of what I think friends and family should say. I stand by it being crap. I get it if a stranger says it but I'm not going up to strangers to talk about how hard things are. I expect more from ppl i know n care about besides some meaningless plateau.
I am personally disabled and saying God would only give me what I can handle is a way for me to fight for strength. To me if I feel God is on my side then I feel like he is holding my hand and encouraging me to fight because he knows I am a strong person. Do I ever get down? Absolutely but I personally hold on to my faith!!!!! I personally also think everything happens for a reason. We may not know why or what the reasoning is but To me every thing and every one has a purpose ❤️❤️❤️❤️❤️
Kristi Licea I have an older sister, born in 1952, who has cerebral palsy and is also schizophrenic.
She’s a joy to know, and I’m so proud of her, and all she’s achieved in life.
She was too intelligent for ‘special education’, and struggled terribly in regular school.
I hope all goes well for your brother.
The medical community needs a "undiagnosed" diagnosis. They need to acknowledge there's a medical problem and provide the correct support regardless whether there's a name. Doctors do not know everything and need to be able to allow people access to the proper care and support! Amazing family, I hope they get some answers.
There are diagnoses that fill that void such as fibromyalgia. It just doesn't cover this specifically
They do have words and terms to cover conditions with no known cause. They use the word idiopathic to describe disabilities with no known cause.They could say these kids have idiopathic global delays, but that won't fix it. It wouldn't help them get care and support.
Yes at one time EVERY disease was undiagnosed .🙏
It takes a superior level of love to care for a child with a serious disorder. My nephew is 20 and has the mental capacity of a 3 year old, his mother is a saint in my oppinion.
You can tell in their eyes they are happy.
I dont see it. Especially mommas
Shannon Ofarrell think she meant the kids
@@emmaleitner ik. After watching completely i agree. I think they have complete normal brain function whichnis terrifying
hi, I am Mandy and have been blind since birth. Can you tell me what these kids look like? And how old they look to be? They sound like to me, but they are at least seven or eight.
@@MrMandygirl12 Hello mandy the children look normal. I forgot how old they were I think the boy is around 5 and the girl maby 7 or 8. They have limited control of their bodys movement with some muscle spasms very close to cerebral palsy but not as severe. They communicate some of their feelings with their eyes, its at times as if they are frustrated that their body dont follow their mind.
These parents have to be the most top notch quality I have ever seen. I hope they know how awesome they are
I once worked with a little girl who had the exact same presentation as Colbie. The exact same right down to her comfort object being music. Her doctor had diagnosed her as autistic which I always found kinda odd. Also when the dad said “I’d like to believe anyone would do what we’re doing” sadly that is not the case. Her father left and her mother sort of gave up and it was her older brother who became her primary caregiver.
Autism is often only 1 of the disorders. Most Paeds Dr's know how to diagnose it because it's extremely common. These kids often have multiple symptoms of multiple diseases all in one body.
As an autistic person, I do think of autism when I see the kids in the video. But that is definitely not all, they have much more than that. There's multiple syndromes that include autism. So it could still be one "disease"
It’s possible they gave that diagnosis so they could atleast receive services/help
I pray for the parents to always be so in love with each other and never separate.
As the mother of a daughter who was born with Opitz Syndrome, I now know that I can only do my best. I take good care of her and she is very unique, with a great sense of humor and a sense of self. God bless all special needs children and the parents who take care of them. It took me forever, but I am doing what I know best: loving my daughter the way she is!!
I can't even imagine what that family goes through on a daily basis, just being exhausted and stressed out not having a diagnosis for their children, but they are such beautiful children. They work so hard for their kids and ofr each other. Amazing parents.
They are damaged children and a terrible burden for their parents. That is the reality. Of course they love their children but delusions are not helping anyone. Lies do not help either.
@@linanicolia1363 ya i feel like they will be divorced in the next 5 years poor parents..
Your story made me cry. I have 3 sons. I dont always realize how blessed I am. I tend to see the glass half empty. Your children are blessed to have such loving parents. I wish you the best and will pray for your family. 💚💚💜💜
With all that the mother and father do, they still make time to braid her beautiful hair. I know I don't have the patience Gene, God bless them.
I have a disabled child and PATIENCE is the one thing that's a MUST to make it as his parent. He has no sense of self-preservation and loves everybody so my heart doesn't get a break. He's my baby, even at 8 years old, and I'm hopelessly in love with him and the purity and wonder he brings to our home.
Cheers.
@@monicascott2354 I so admire people who have patience. I certainly would like to believe I would with my child. Bless all of you that go thru situations like this. Those Smiles on their faces. That's love
@@gaylemc2692 all children require a lot of patience but your patience is put to the test when you have a child with disabilities. But until you have a child who has disabilities you have no idea how strong you actually are. I'm not going to lie to you and tell you that there will never be any tears because there will be.
@@kristilicea1472 💝
Myka Stauffer should really see this
Yep but it's to late now
Did they find the boy??
@Angels_up_in_heavenxx Forever in our hearts they had to have done something to him. There police would have been able to find him. I really hope he's alright 😨😨
@Angels_up_in_heavenxx Forever in our hearts oh my gosh!! I had no idea they did that to him! I'm not expert on kids but I feel like you should know to no tape. Their. Hands!
What is everyone talking about?
I wish I knew them. My daughter has cerebral palsy and she is 13 now. The stages of her growing and her behaviour is so similar to them. I didnt hear a yes or no until she was almost 12. I had the same dreams as the mother and I still get choked up. We didn't know arica was disabled until she was 18months old and still wasn't crawling right or reaching up to stand. So we saw the Dr. He sent us for x-rays and when we went back he just floored us by saying x-rays zlzook normal so if its c.p. we can get thru it. Like it was something we had discussed b4. My arica did behave so much like these guys and still has some of these behaviors. I wish I knew these parents to give them support.
My son is 8 and non-verbal. It's TERRIBLE that he can't answer me when I call him. One time he hid up in the extra bedroom to eat the grape tomatoes he stole from the kitchen. Cheeky devil.
I also understand and can sympathize with the grief we parents feel for our disabled kids. My boy will NEVER be like other kids, because that's the way he's made and even though I still ache for things to be different I'm okay with the way things ARE.
You keep it up, Momma, and love your girl with everything you've got. Hugs to you from Colorado.
P.S. The only thing my son, Jaxon, says clearly is "bear." Hahahahaha.
Jennifer Mommy my daughter has cerebral palsy also, misdiagnosed when she was 3 and yes the attitude of many is we just have to deal with it. Our hearts break daily. You are not alone. I send love to you and all parents who are going through this.
What wonderful parents these two precious children have.
Some of their traits are very similar to autism as well unfortunately they could have a combination of both. I know that the Cleveland Clinic is supposed to be one of the best hospitals. I just don't understand in this day and age they can't seem to diagnose it. But maybe they're simply looking for one specific thing instead of multiple disabilities in their children.
Abhay Ranade
Blessings to you for your kind heart. You will be a good father someday. If not a father then a good uncle, brother, friend and encourager. Much love to you.
I was crying this whole video because I used to take care of children just like them. The love I have for them was endless and I miss them dearly but Covid stopped me from being with them anymore. This isn’t an easy job and I salute all the parents who have children like this. Consistency with working with them actually really helps. I got my kiddos to hold books and they could turn the page. It was amazing the progress.
I became disabled after spinal surgery at 40 and my parents rejected me completely because they couldn’t cope, I can’t imagine how a parent adapts to the non linear development and conflicting medical diagnoses, they are doing brilliantly and they need people to empathise not patronise. Beautiful family.
I feel so bad for you. I had a major surgery on some nerves in my early 40's and my mom had to help me bathe and dress. Without my mom I would have been living in my car, because I couldn't work.
The parents seem lovely
Sometimes parents think that their disabilities hinder them from being happy. The fact is you don’t need to be like others to be happy. Disabled kids are happy as long as they have loving people around them . And those kids do. They are happy. They feel loved and content because they have such loving parents around them.
I’m working with kids in the autism spectrum and I see many signs of autism in both these kids. I hope the parents get a diagnosis soon so they can get the help and support they need with the kids.
But she cant even stand. Ive seen even the highest autism and they can still run. This might be autism Plus another condition
Crystal T I’ve worked on two special needs schools where in one everyone can walk and in the other nearly no one could walk by them self but I’m pretty sure that everyone has autism and another condition which is really common that they have.
When i saw the Video i also thought that both children have Symptoms of autism! The motoric signs with hands etc. Could eventually be a signs Form rett Syndrom ?! ( Girl)
These poor people. They are doing everything possible for their kids, and that is so admirable, but I cannot imagine the heartbreak of being surrounded by healthy children knowing that yours will never have lives that are in any way comparable.
I agree when mom said people don't know how lucky they're to be able to do things by themselves. I would also add that sometimes we, as parents, forget how blessed we're to have the kids we have.
And I have to say, I have never seen such a great team and lovely parents. I hope they can realize how lucky their kids are to have them as their parents, though.
Those parents must be incredibly exhausted😥. I wish them the absolute best.
I think that if you want kids, you need to consider if you could handle caring for a disabled child, physically or mentally. It's a lifelong commitment, and some would-be parents just assume they will have a healthy child.
Exactly why I’ll never have kids
@@HiIExist same. In my opinion procreation is always a selfish decision made by the parents, a person can't consent to life so it's selfish to bring them into existence.
This is the worst thing if pregnancy goes right and disability apears after birth, you don't even have a chance to decide if you want to have such a child.
one always has a choice, even if the possibilities are all terrible. No one can be forced to be a caretaker or parent. One can always leave them to the State. Living with yourself would be very difficult, but 'parenting' these children would be soul destroying. Life murdering. Happiness annihilating.
I would take the exit.
You are great parents and no , not every parents can do what both of you are doing for your children. You guys are amazing!
So heartbreaking. I hope they have the right support these families. What beautiful kids, no matter what condition they have they are special 🙏 I just want to give them all hugs 🙏🤗
@dražen g unfortunately they actually need to have a diagnosis first for that. To me that Dr doesn't really seem to be doing anything but the bare minimum for that family. I think I'd find another Dr who wouldn't just seem to throw up his hands and say oh well
This is several years old, would love to know if there are any recent updates
Google them. There was a website
My Youngest Son was born with disabilites, not as extreme as these beautiful children, but no Dr we took him to could tell us what the problem was, in the end we raised the money through fund raising and took him to Great Ormond Street privately, im in UK and were given a diagnosis of Worster drought syndrome which seemed very apt at the time, when he was 2, but hes now 25 and iam not sure if he has the correct diagnosis, hes probably more on the aspergers/autistic spectrum, but its so frustrating when you just dont know. They are doing a great job with there beautiful children, when they are born with something wrong you dont get a handbook on how to do things, but you as parents become the experts, no one knows your child better than you do. I wish them every good wish and hope that they can one day get answers. God bless them all.
Lleyton seems to be a lil bit less affected. I wonder perhaps he can walk by now? You guys are amazing people, undiagnosed or normal children, one can be so lucky to have parents like you.
i don't believe lleyton walks. mariel was my art teacher in 4th and 5th grade, and im 17 now. i still keep up with her and her kids and as of recently, hes still in a wheelchair. regardless, they are such incredible children with wonderful parents.
@@liv6741 Such a shame. Lleyton seems to be less affected than Colby to my eyes also and knowing he still doesn't walk is a bit a surprise. But I wish they are still happy as they were at the age of this video, walking or not.
@@dadycreations100 You don't have to worry about that. these children are so incredibly happy. I'm sure they're working towards him walking with a walker and braces. it most definitely is possible since he's young.
@@liv6741 👌
These parents are doing great work. As a former special needs student, I feel your pain. Big hugs for these two special lovely children.
Beautifully dedicated family. I truly hope the answers they need are found. The little girl helping Colbie clap her hands in school was so nice to see. We all need to offer support because we truly never know what other people are dealing with.
The stress level you as parents deal with is unimaginable. You ARE great parents!
I am in complete awe that not only are they wonderful parents, but they both work full time. Incredible people.
Thank you for sharing your lives with us. This has been a spiritual experience for me. Your sorrow is palpable and your love is reflected in the faces of your children.
I am so glad this documentary is making the rounds online!
I’m curious why the girl is in a typical classroom if she can’t function in one. I’m not asking it to be mean but she could be in a better classroom environment that could be of more help.
I think it is part of the inclusive educational policy of the educational board. (maybe?)
Where people with dissabilities have access and are included in society....please correct me if im am wrong.
@@christinegordon3712 From a legal stand puttig her in a typical classroom like hat is wrong normaly childern with special needs would have what's called an IEP they would be in a Special Education classroom or classrooms not in a typical classroom
Caroline Bruder it may be only for a certain amount of time she’s in class with neurotypical kids. My elementary school was well known for having an extensive special needs program and part of that was, for an hour or so a day, a kid with special needs would visit my class. I think both to get us “normal” kids to understand that we shouldn’t treat the others with special needs as bad, but also to make the kids that visited feel like they were part of the school.
Jody Smith even with an IEP some classrooms are integrated for at least part of the time
Lots of kids have gen ed minutes in their IEP’s
I’m praying for this family. I pray there is the answers. God Bless you! I have a daughter soon to be 26. She has global effects. She has 10 words, when a new one comes an old one goes. We are now raising our 2 year old grandson that also has global effects. No speech. They both love music. Like this family, we pray they can communicate. Thank you for sharing your children and your lives with us❤️
What amazing parents. I feel so sorry for them that I don't feel like they get enough one on one time though. Or even time to themselves. I wish that I lived by them so that I could learn each of their care routines so that I could give these amazing parents one night off per week. Because they sure deserve it!!! I just want to reach out and hug all 4 of them!
I heard this analogy once regarding giving birth to a special needs child: Imagine you are planning a wonderful move to the Bahamas. You have waited years for this and you couldn't be more excited! You buy bathing suits, suntan lotion and all the works to enjoy and thrive in the tropics!
But when your plane lands, you disembark and find you are in Norway! It is winter, and all you have is a tee shirt and shorts! You have to struggle to find a way to make it in this very different world! Nothing is what you expected it to be, so you throw out all your tropical gear and find winter coats, boots and all the cold weather gear. You weren't prepared for this, but now this is where you are, and over time you have to adjust to survive and thrive.
Waiting for a new baby is like preparing for the tropics, the flight is the birth and Norway is finding out you are now the parents of a special needs child. You aren't prepared, you may not even know where to start, but over time you learn to adjust. First you just get by, then you start to thrive and you may even find you like Norway.
Know you are not just care-givers. No one will ever love your children more than you! It is the love that makes the difference! But rest assured there are well-trained professionals who can assist you as your children become adults!
You're children as so lucky to have parents like you! There are many children who are abandoned by one or both parents after they found out their child was special needs. There are orphanages overseas FULL of special needs children and they are unloved and so neglected some do not survive to adulthood. Even here in the states you can find children with special needs in the foster care system. Many chose not to accept the challenge of having a special child and just walk away.
That's analogy only works for certain disabilities that are noticeable at the time of birth. Some of the others take years to get a diagnosis and others like this family are in limbo. Because if they'd actually get a diagnosis they'd get a lot of help through medicare and Medicaid for their kids.
MsBecki
I first read the story about the tropics/Norway in Ann Landers or Dear Abby. I believe it was originally written by someone who had given birth to a baby with Down Syndrome. But yeah, it can apply to many other conditions/syndromes/issues. Thanks for sharing here. 💖
I dont judge the walk away people.
The person who wrote this knows nothing about Norway. Once you have a child with a disability, you and your child don't get to take a break from the disability six months out of every year. It isn't really hard for "just" four months during winter. It feels absurd reading this now, while sitting in front of an electrical cooling fan, drinking water with ice cubes, hiding from the scorching sun... In Norway.
@@TheKimber35605
No judmwnt here as well...
Id rather see a parent give their child up then keep the child and have anger and resentment for the child or not have the needs to care for a disabled child.
I believe when a parent knows they can not care for their child and places their baby up for adoption,theyre putting the child first by doing so.
So sad, but hope remains. Amazing that whatever a child is born to endure, love is always present, no matter what problems manifest. As long as the child receives love and care from the parent or other caregiver, the child will respond with all that he or she is capable of as positively as possible! Love really does try to conquer everything. ❤️
For what it is worth you are both absolutely amazing. Probably you guys never intended to be heroes. But you are. Thank you so much for sharing this with everybody.
This family needs help. It’s so very sad, these parents are doing an amazing job. X
Exactly. That is the thought I had throughout this documentary. These parents need help, a lot of it. They need state funding for full time caregivers and they need an exit plan for the children. They will need full time intensive care for their whole lives, and these parents should not be expected to provide that. Here in Switzerland, they would have so much help and the children could live in the highest quality theraputic group home. And these parents could do something else with their lives beyond caregiving.
yes they do and some time alone, without the children. They are taxed to the max. Leave the kids with grandparents or friends and have a normal vacation. Should be doable.
@@linanicolia1363 it takes a lot of trust and training to leave two disabled kids with even grandparents. Where I live, my twin and I get 24/7 caregivers and nurses, all medical equipment is provided, wheelchairs, therapies plus more. No cost to us. My parents can just be parents, they don't need to burn themselves out trying to do full time caregivers and parenting. No financial burden either. We have respite care each month if we want to. My twin and I can go stay in the children's hospice for a weekend or 5 days a month, or longer every 6 months. My family usually is able to take on holiday or wherever too, but it's still good for us to have respite away from home as well. It's terrible that that isn't the standard in all countries. The quality of life of the disabled, and the quality of life of their family shouldn't depend on the country they live in. I couldn't imagine living anywhere else, without all the care and support we get here vs the US etc
I’m overwhelmed at the care, love, and patience these parents have. Hopefully, they understand that are loved for the excellent job that they are doing by raising their children!! I knew Mariel from our college days and she still has a heart of gold. God bless both you!!
There is so much love and light in their eyes!
Honestly they are absolutely beautiful babies. Those smiles. Its absolutely exhausting emotionally and physically being a special needs parent, and thinking of how thinga aren't how you thought they would be but these kids are still absolutely worthy of love
I just want to hug this whole family. It’s hard for all of them 💔
Scary to think brain function is vompleyely normal so she might be completely normal in her own head
😭😭😭😭💔💔💔💔
Her brain function isn’t normal...there just aren’t any tests that show the specific issue and confirm a diagnosis. Developmental delays this severe are not that of a perfect working brain. Both children show distress similar to those who are on the spectrum and nonverbal. That’s why the pRents look and sound so defeated. There is clearly something wrong but they don’t even know what, let alone how to begin to treat it.
Completely, not vompleyely.
@@Flamsterette clearly
Yes truly incredible parents!! I love how they still kept their circle of friends & participate in friends activity even though for Cobie & her brother it isn't on the same level. It's so important for all the families to be involved. Then everyone is participating & the experience of life goes both ways. It's so important not to hide any child with disabilities it robs society from the love & knowledge that not everyone is the same but it doesn't change the need to be accepted & loved.
There is no words to describe how amazing parents you are . Really am speechless.
Gorgeous, sweet kids, they look happy. They got lucky with their amazingly strong parents. Wow yous are truly inspiring and real examples of great parents. Thank yous for sharing your families story.
A beautiful couple and a loving family. I hope they stay together forever and get every amazing blessing in this world.
Bless this family. The parents are trying so hard for the children, and the children seem happy and living their best possible life.
Thank you for sharing this part of your life. I hope that you do receive a diagnosis. You have absolutely beautiful children.
These parents are absolutely phenomenal and I send them my love xx
Poor suffering children, heroic parents. Reminds me of Rett syndrome.
ahh this made me cry so much! only because I completely understand what they are going through and I know the toll this takes on them. my first and only child has level 2 autism. its so hard being a parent to a disabled child, but the love we feel for our children is so strong. I love how the classmates and teachers treated these kids and involved them in everything. I pray my son will have a similar experience once he goes to school.
Wow, what a beautiful, moving story! These people are heartbreakingly beautiful and their children are precious angels. I feel forever changed by witnessing and contemplating their lives.
Incredible parents! I wish you guys all the best! You’re children are beautiful
My daughter does overnight care for a disabled little girl. She is 4 now. Her parents are so good with them. They have a 1 year old boy and worry about him too. He is lagging behind too. They are so dedicated to those children
You are absolutely parents. Incredible ones, at that. ❤️
Praying for the kids and these parents. There are so many arrogant parents that have no idea how lucky and blessed they are.
Such a amazing documentry, also such great parents and friends.
They're improving it seems just slowly
I hope they get funding, help, and answers!
Y’all are such amazing selfless parents & the way as a couple you take care of your children! WOW just WOW TEAMWORK!!!! 🫶🏼 Don’t lose hope & I’ll be praying for your family! 🫶🏼
If I had a 25% chance of having another child like the first, I wouldn’t have anymore kids... that chance is high
Sarah-Jane Kerr Yes.
It is very selfish and cruel.
@sarah-Jane Kerr, so flip it! If you had a 75% chance of having a “normal” child would you then go for it? Yes!
Jada Garrett no... 1 in 4 chances of having a child who is disabled is high!!! Just look at this family!!! They had a 1 in 4 chance, and they lucked out!! If the chance of me having another child like that is 1 in a million then sure, I would try again... but 1 in 4 no bloody way!!
Jada Garrett nope
Two amazing people who ARE parents to two very special one of a kind children. God bless this beautiful family ❤❤❤❤❤❤❤
May God bless this family and give their amazing parents the strength to endure....🙏🏾💖
My wife and I have a child with cerebral palsy in the North Olmsted area. We know exactly what you both as parent are going through. Would love to meet all of you one day. Stay strong
I stress everyday on the small things just waking my kiddos up because I know the difficulty in waking a child and getting them up and moving out to school then picking them up and getting them to even eat something or even learn something....then I watched this and I must say you guys are an incredible family. The way you interact with your children for me to watch was amazing and I really hope that soon they will figure out a diagnosis your children are beautiful keep doing what you guys are doing..still tearing up
Your children are beautiful they have such stunning features. Never think that you are not a parent to those kids. You do so much for them. That's being a parent putting your kids need first. Well done....
You are the definition of parents! Your doing beautifully!
Actually, she said she feels not like a mother but more like a caretaker. And based on this video, she defined her role with absolute accuracy. Being a parent is a much richer, more rewarding role because it is reciprocal. But there is zero reciprocity in their relationships with these profoundly disabled children. The children will never be able to have a real reciprocal parent-child relationship because they do not have the capacity to engage. These children receive care. That's all. This is the nightmare of every parent, and these good and decent people are twice cursed. The burden they carry is unimaginably cruel.
Amazing parents. Wow. They should show this at parenting classes everywhere.
id been a special education teacher for more than 10 years... i handled severe cases like these two beautiful kids. Im so glad i made a big difference in their development through Gods help and perseverance as well as support of the family. How I wish i could also share my knowledge to other country someday..
It’s so difficult to have a child with a disability. Other children AND their parents can be so thoughtless and sometimes cruel. Hurts your disabled child, yourself and their siblings! Your case is exceptional and I give you SO much credit for doing everything you’re doing! 💕 Basically, YOU BOTH ROCK! 🙏
I'm sorry but 25% chance is quite high.
Two amazing parents ..They are a really lovely couple with children with whom they have worked so hard 👍
All children are beautiful and deserve such parents.
Maybe that's why I can't be a parent cause my emotions would be all over the place, overthinking,stressing, panicking,worried at what would happen next to my babies😭This video is beautiful but it made me cry the whole time especially at the uncertainty and where the child was crying and hitting the table before her dad put headphones
wow just wow ..what an example. 💛💚💙💜🤍Love you guys and love your babies..Keep the hard work...lovely family ...the love and magic around you are just incredible. The shine you all shines is incredible, like out of this world I don't know how you do it day by day but believe me, seeing you, the sadness; the happiness; the struggle the victories. But most of all, the kid's happy faces, love for music, make me believe there is HOPE WHEN LOVE IS THE ONLY THING KEEPING YOU ALL TOGETHER FIGHTING LIKE THAT AND YOU WILL PREVAIL DONT GIVE UP...
This should be required, watching for anyone who thinks they want to have children one day.
Genetic abnormalities can happen to your children, too
Is there a gofundme to help this family?
What a wonderful idea...The problem is, their names are withheld.
The mother has instagram account, her name is Mariel Krakowiak, acct: artwith_mrsk.
They should get any available funding! Special for those are undiagnosed there need all the help and support their can get. There truly love their children, regardless of what they suffer from. Both are very loving parents.
Thanks for sharing this video. I definitely share this video.
I hope that they get a diagnosis for the children ❤️❤️❤️
It takes mental strength that not a lot of parents have to handle the things they are going through. I can’t even imagine how they must feel but they are doing the best to give their children a good life and they are great parents. I hope they can see that
So touched and blessed :')
so sad, Stay connected.
Boy how I cried....God bless them all. Cute kid's.. :)
the fact that y’all have stuck with them and have been doing everything in your power you can to help them and be there for them shows them that you guys love them. they might not be able to say it back but they love you guys.
mariel was my art teacher when i was in 4th and 5th grade. i went to school with colbie and im now 17. i had no idea she was her mother, and had another child just like colbie. even with everything she had on her plate she was still such a great teacher and a bright part of my day.
Those sweet babies. Those amazing parents. I am in awe of their strength and I would give anything to be able to help
The parents seem really nice, must be so difficult, hope things improve for there lovely children.
Just seeing their sweet smiles on their beautiful faces made me feel so happy for them in being able to make that slow progress'! But I couldn’t help crying for this dear family. What they have to go through each and every day to care for their two children breaks my heart but I know they do it so willingly and patiently with love . I know for certain that there will be a time that they will be well and be able to be as healthy as their peers. I just wish it would be soon
Respect! I couldn't deal with the noise.
I found this presentation extremely fascinating. As a psychologist, I have so many questions I would love to be able to ask. You are great parents..
Brilliant documentary.👍 Thanks!
Beautiful parents. ❤ beautiful kids❤
Your joking right ?
@@melaniesilva8182 if u haven't got any thing lovely to comment please refrain from doing so. My mother worked with kids and people with disabilities we had them live in our home. As i got older i tried so many differant career choices. But i always came back to working in this industry. Some of us are born with a heart to do this for a job some ain't. ❤
melanie Silva what would she be joking about? Are you seriously asking that? Your type is the reason why kids bully and adults with children with disabilities feel so alone. Shame on you Melanie Silva, Shame in you! Sick
@@melaniesilva8182 maybe if u actually spent time with beautuful kids like these u mite learn unconditional love and true beauty is in the heart. Its got nothing to do with whats on the outside. Gee miss silva i feel sad for u 💔
@@melaniesilva8182 You are one of the sad jerks living on this planet.
Only God knows what's going on with these two precious little angels. One day they both may just progress as they gets older. These are wonderful & patient parents & that means a lots. This family is in my prayers . 😇🙏💞