Life With Our Undiagnosed Special Needs Children | On The Red Dot | Undiagnosed - Part 1
HTML-код
- Опубликовано: 7 мар 2023
- In Singapore, 3% of babies are born with a birth defect every year. Some conditions remain a mystery as limitations of genetic testing left the cause unknown.
Twins Dzakir and Dzakwan were hospitalised at age 1 when doctors saw they do not resemble their parents, nor babble or make eye contact. 17 years later, the family is still looking for the cause of their lack of speech and other conditions.
After Anand and Suman saw their first-born Atira experiencing trouble learning to sit, walk and speak, they took all tests to ensure their next child would be normal, only to have Seana display the same signs of delay. When no known condition could explain what the sisters have, doctors started investigating if it could be something undiscovered.
16-year-old Jayden has always shared a room with his three sisters, as his low muscle tone and lack of speech leaves him dependent for help for all self-care activities. His parents were left in uncertainty as the cause of his condition remained unknown.
WATCH MORE Undiagnosed
Part 2: • Our Children With Rare...
=========
About On The Red Dot: CNA's weekly programme documents the stories of ordinary Singaporeans and celebrates their resilience, identity and sense of belonging.
===========
On The Red Dot playlist: • On The Red Dot | Full ...
#CNAInsider #OnTheRedDot #Undiagnosed #GlobalDevelopmentalDelay #GeneticDisease
For more, SUBSCRIBE to CNA INSIDER!
cna.asia/insideryoutubesub
Follow CNA INSIDER on:
Instagram: / cnainsider
Facebook: / cnainsider
Website: cna.asia/cnainsider
Watch Part 2 of Undiagnosed here: ruclips.net/video/F74OvIBn5po/видео.html
Im dealing with this as well with multiple children.....
I applaud the parents for putting that much effort into brushing their teeth. I’ve seen many caregivers and even staff just refuse to brush teeth because it’s too hard
I see it a lot in our younger kiddos working with special needs where they have really expensive dental needs cause they can't tolerate the sensory input in mouths and are frequently biters so doing it is potentially dangerous. I think this family is doing amazing because that is such a challenge!!
I have to brush my son's teeth who is also 4 and autistic. I always worry I don't get them good enough but I try
I have a non verbal son, it was always difficult to brush his teeth but since he likes when I tickle him, I now say lets tickle your teeth clean. making it more fun & now we have no issue allowing me to "tickle" his teeth 8 yrs old no issues with any of his teeth so far luckily cause just a regular dental appointment is stressful enough cannot imagine the stress of having actual dental work done more than just a cleaning.
Yes my daughter has Down syndrome and I make this a routine plus I’m a dental assistant I see a lot of patients with special needs and there teeth 😢so yes it’s a must
That’s stupid. Brushing my dog teeth is hard af but i still do it. So for PEOPLE?? Do your job as a parent/caregiver
Hello, my brother showcases a lot of the same behaviours as the twins in this documentary: developmental delay, walking on tiptoes, sunken face, gut issues, chronic constipation, cannot gain weight. My parents never looked into genetic testing and just accepted that he was meant to be on this earth as he was. Things only get harder as he grows older and it truly takes a village to take care of an adult child. The government helps but no one can truly give the care a family can, especially strangers. These parents are doing amazing, I commend them for the love and care they give to their children, you will be rewarded in the quality of life your children will have.
Autism.
👍👌💯🌻
Have you ruled out autism?
Hello Nhaila! My younger brother also has almost the same issues as the twins. We have had "diagnosises" in the past that were then taken back by the same doctors. He is now 21 this year, and both of our parents have passed away. If you would like to ever reach out and speak more with me, let me know! I want to hear more about your brother ❤️
That is love in all it's hardest moments.
I highly respect these selfless parents for treating their children with so much love & care, not giving up hope on them. It made me tear up when they’re all so patient towards their children. Praying for the best 🙏🏻
Every parent in this video has devoted their lives to their children and they’re overcoming the stigma that still exist especially in some cultures. But these parents are so devoted to their children.
It seems to me that the majority of these special children are blessed with special parents.The parents are incredible❤
To all the parents of special needs child, you are the best dad and mum. Dont give up, the time you invested will always reap the fruit of your labour. Always positive, all needed is time and patience..God give you the extraordinary strength...
💞💞🙏🙏
I was born with cerebral palsy, partially deaf, and have sickle cell trait. I am now 62 this year.
I have had the experience of knowing what it is like being able to walk and stands from the age of 2 1/2 to 12 years old. I went to the hospital from the age of 10 and 12 to have life changing posture operations After my 2nd operation on my legs at the age of 12, I went to the hospital walking aided, came out, not due to a medical operation blunder.
I know growing up my life so far has tough physically I’ve accepted that I have made the best of my ability to be able to get around. I didn’t turn on it. I just got home with things. I was married for 27 years and now a widow for the past 9 years. My late husband also had a disability he was my legs I was his eyes and ears put a timer wait what together in, unfortunately, we have not been able to have children which we wanted to have. We also had to accept the discrimination of various authoritarian institutions of not being able to adopt.
To cut a long story short I am very grateful thankful to both of my parents for the way they brought me up.
God has set me some horrible life-changing challenges, but I have come through nearly all of them so far I have been some physically where the medical profession, have said I would not survive and I have proved them wrong.
I am currently going through secondary breast cancer since 2021. I am being positive I am determined to come through this too much time is not up yet and I I know my treatment is tough. My other physical challenges, I shall just take it my stride.
I have to put up with the very domineering parent who insists on treating me like a two year old, who does not like to take no for an answer even from Authorities. Apart from that I have a wonderful support net work, except for the NHS there is no support network for people with cerebral palsy after the age of 16 when most children have left school the organization scope do not want to know. Here in the U.K. Governments are gradually doing away with special education needs schools where possible.
Yes totally agree! You give your most love, patience and resilience to care for your kids. You are A M A Z I N G parents! ❤️❤️❤️❣️
I just wish governments would take the time to understand that and in some countries they treat parents with and people with disabilities as though we don’t exist.
I love to learn about other countries how they look after children, people with disabilities. I am absolutely amazed that in most cases they are better than us in the western world despite the lack of resources.
🙏 ❤❤
Some people take for granted so many things that their children can do. Talk, walk, eat, chew, jump etc They don’t realize how many kids out there wish they could do the same. My son wouldn’t say any words besides “mama” until he just started school this past fall. So although he is behind verbally still, I jump with joy every time he is able to say a new word. It really means the world to us. We praise those little things because they mean a whole lot! ❤ What may be small to you, may be big to someone else. God Bless
My son is 3 and still nonverbal but I have faith that one day he will speak
@@ninaryan2012 don’t lose hope I was nonverbal for 6 years from 97-03!..
加油⛽️❤
I knew Jayden’s sister Jeslyn in primary school. We were friends and she always knew how to made people smile. I have seen her family before at school events. Bless her and her family. She was so nice. We were classmates and I really miss her
Jayden walks so well in the pool. It's amazing really. All these children have one thing in common,and IMO the most important, they have loving people looking and working with them.
Lies again? Special Agent National Service
These children are very lucky to have such loving and selfless parents.
That's should be regarded as normal parenting. Tragic that it's regarded as special.
I give these parents alot of respect. I have 1 special needs 4 year old with autism and 1 is incredibly difficult let alone 2 or 3. These parents are amazing
I work with special needs kids by teaching them movement through Parkour. Really opens my eyes to how much we take regular things for granted such as walking and even jumping. For my spec needs kids, when they achieve milestones like being able to jump up with 2 legs, both me and their parents celebrate together and it's such a heartwarming thing to experience. These kids are a really lovely bunch, and all deserve a chance and for people in general to be more patient and less judgemental towards them. Thankful that there is more awareness created through documentaries like these.
I wish the world was chock full of the kind of people this family is. What calm intelligence.
Jayden reminds me of my son, Alex, who has cerebral palsy. And Alex also hated the Happy Birthday song, too (although I think he hated balloons much, much more. Even as an adult now he still won't go near or touch a balloon). The twins at the beginning also appear to have CP (it's much more common in twins) and maybe autism. I hope the families find answers soon. Having a diagnose doesn't really change anything, but just being able to put a name to something makes it more understandable.
I love these types of segments as it highlights various life challenges every parents face, that its not always happy and stress free to every families, I applaud the parents for putting so much effort, patience and understanding on raising their children with special needs
All these parents are amazing .it must be so hard. You can feel and see the love. It must be so worrying for the parents to that they will one day be to old to look after them and who will care for the children once they are adults because strangers never can give the same live or care. I wish them happiness and peace and that one day they will get the answers that they deserve and need . Wish there were more people in the world like these amazing humans . I've got a disease where I know I won't make it to 60 and I'm 44 now and I was sat feeling sorry for myself today (was having a painfull and bad day. ). And then I watched this and thought to myself snap out of it .I'm blessed compared to these family's . At least I had 40 "normal" years and thankfully my 3 children are now all healthy and happy adults . So THANKYOU for making me realise my life is no where near as bad as I thought it was . You will have helped and educated so many people with this film and itmust have been hard letting the filmcrew into your personal life . Love and prayers from the UK xx
This brings tears to my eyes. Kudos to these parents for taking good care of their special needs children. Berat mata memandang, berat lagi bahu memikul 🙏
Being a care giver is really tough. U guys are doing a great job.
I just caught myself smiling when he was able to brush his own teeth!!
My eldest son was diagnosed with mild autism and it was very difficult for me to accept it or wrap my head around it. I can't imagine how it would be like to get undiagnosed condition. I have to be thankful/grateful that my son is still able to walk and be independent. My youngest son is also showing signs of autism and I'm sending him to get diagnosed soon. It's not easy dealing with special needs children especially when it's more than one. I sent both my kids to EIPIC at SPD school. I saw a lot of improvement after attending. I just hope that one day, all the parents will have an answer for the conditions of their child. 🙏
I know so many people with autistic kids now its crazy. What is going on? So many ! I wish you all the best on a difficult road. 🙏🏽
@@dreamsofturtles1828 a lot of things can cause autism it can be genetic or come from certain things such as medicines/pills that are taken during pregnancy
@@celestea_. wow... Ur comment really helps in the suffering of the poster. Blaming the parents for the condition of their child...😅
@@bry120 autism is genetic so yes it is quite literally parents fault even if it was not their intention
@@dreamsofturtles1828 have you looked at the chart showing the number of reported left-handedness over several decades? same thing with autism. There's no conspiracy, just the improvement of technology, resources and awareness to spot the signs of autism and correctly diagnose them.
Without parents we r zero..🎉🎉❤❤
Thank you for always letting us learn something new and not take things for granted in life.. great program❤
Bless these kind and loving parents
God bless these parents. I hope they can get some help so they can have breaks. So hard being on 24/7.
Prayers for all the parents here and may all the kids show progress and strength.
Some really competent and dedicated parents here. It's heartening to see special needs kids in the care of such devoted parents
Early intervention is so very important. There's a trend in western Europe to keep special needs children in "normal" schools and projects at any cost but while well intended, it puts these kids at an even bigger disadvantage. These kids need more for every milestone than parents can give.
Semoga Allah swt mempermudahkan segala urusan Puan Norah Johari sekeluarga selalu. Amin ya rabb.
May these families be blessed with strength in their faith, health and patience in facing challenges of raising these children of heaven.
why only pray for one family ?
@@martinh619 can’t you read?
@@martinh619 in her msg she already wish may these family..: perhaps you missed it
These parents are so strong!!!
i salute to all parents that really love, take care of their special need children with pure hearts, meanwhile there are also some bad parents who treat their special ones badly. i know it's not easy to deal with this. all of you are amazing..
Respect and salute to these great parents 💪💪💪❤❤❤
God bless these devoted families.
They are really good parents
They took good care of them
Can't wait for the next episode. I pray to each family to finally have the answers they've been looking for
My son for the longest didn’t like the Happy Birthday Song ❤ But since starting school and hearing it so much from his classmates parties, he’s definitely gotten better. Some kids don’t like slow songs being sang loudly or as a group.
same with my sister and she still hates it
wow! This video spreads so much awareness. Also respect to the parents
Bless those sweet parents and their children .
😪 people have no idea how hard this is makes you cry yourself to self every night
Stay strong parents and thanks for sharing
I have an uncle, who cannot speak, he only makes noises.
Still he is very intelligent, he understands us.
He also has to wear adult diapers, because he cannot go to the toilet.
I do not know what he has, but he is dear to my heart.
I'm no doctor but I do work with kids with Autism Spectrum Disorder as a Behavioral Therapist in the United States, and Atira and Seana definitely exhibit signs of ASD. Again I am in no place to diagnose but they should definitely look into it and the different symptoms of ASD. Being nonverbal and also verbal, sensory issues with sounds, and delayed milestones all check the ASD symptoms.
Such a loving family .. God bless you all.
Such beautiful families.
May God Bless all special needs families and ease our pain and hardships ❤ We can carry this responsibility, all we need is for the general public to be more empathetic and suspend all judgements towards us and our loved ones with special needs ❤
these parents are so amazing and loving
my heart cries and happy at the same time, with us parents, who will take care of our special kids when were gone? I had been wondering about it... IM praying that God will give long life for us to to be able to take care of our loving and special kids ;) sending air hugs to these strong parents.. you give me more courage to continue with life and take care of the special needs of my son. GODBLESS. STAY STRONG AND SAFE
Salute to the parents...
I am glad you research also.
I totally admire these family their strong will and positive mindset.
I cannot fully understand in their position all time but I know the experience and see with my own eyes.
We shld emphasise them. Stay strong this family May God/ Allah SWT bless you all
Being parents is a very hard task... God Bless All the Parents in the world... 😊
*Well done CNA Insider this is a great documentary hope next can do episode on caring for adult with all sorts of mental illness and also life inside IMH*
Got to think that these parents must be living in survival mode constantly.
Would love to see a part 2!
ruclips.net/video/F74OvIBn5po/видео.html
such wonderful and loving parents...may God give you all strength...any disability, mental or physical are so overwhelming for parents...just happy to see, the children are loved and well taken care of...thank you for sharing this video
Bless your kids🙏🙏🙏
Ahh so sad for these children. Much love to these families. ❤
Great job to the parents and caregivers coming forth to share their stories! Can learn a lot through their experiences. :)
Sweet boys! They are so blessed❤
I respect the parents to still show love and stay strong for their family.
Wonderful parents ❤
Mashallah may allah bless this family tremendously
God Bess you all are doing great
Stay strong!
In the USA special education school programs us the IPAD & special non verbal apps to teach students how to verbalize words - allow students to speak through the IPAD. You may want to ask your speech therapist about this form of communicating.
Beautiful family
These precious children have no control over how they were born and deserve to be treated with all love and kindness, bless the parents and caregivers who take care of their special needs children.
My daughter was undiagnosed until the day she passed. That was in 2009 when she was 15. She had a seizure disorder and had the mental growth of about a 2/3 year old her verbal skills were about that of a 2 year old. She exhibited some self-stimming behaviors but we never got an answer. Nearly 15 years later I still wonder...
Salute to the parents
All loving families happy their children have them
no
The boys in the beginning of the video have parents tried an electric childrens tooth brush with kid flavored paste or nursing homes use a disposable tooth swab it has the tooth paste in the swab and the caregiver nurse cna just dampens it and rubs it along the persons teeth
It's very soft like foam and I've seen them in pink and green colors and there's no need to rinse with them either.
we had the same problems proud to you better than us. hope we can better and better
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
Psalm 139
God bless all the parents of children with challenges. May our good God provide all of you with extra strength to soldier on. Just remember that these special people have beautiful minds though some of them cannot articulate their thoughts. May God watch them closely from above, and their undaunting efforts be valued and appreciated by ppl around rhem. God bless all of you.🎉
Shocked 😲
May the God bless them ❤
Got bless these beautiful families to help them overcome the obstacles in life.
Wow, I REALLY thought the girls were going to come back with Angelmans syndrome, our cousin has it, and they remind me so much of our Ryan. The good news is the research was initially wrong back when it was called Puppet syndrome. My cousins were told that Ryan would be lucky to make it to his teens. He is currently 45 years old. He too has epilepsy, non verbal, has motor skill delays, he also has diabetes, high cholesterol, and blood pressure. His parents are amazing and take extremely good care of him, measuring food, counting macros, etc. They were told early on that they both carried the genes that cause Angelmans syndrome and all of their children would face the same outcome, so Ryan is an only child.
اللهم لك الحمد على النعمة ألي ربي أنعم بها علينا. قطعو قلبي بس مأجورين بإذن الله🥺🤍.
I am also a special care kids got ADHD and Asperger by genetic (only diagnosed when I was P3) and only able to speak and control and not letting my saliva to flow out of my mouth at 5
strong families 💪🏼
super inspirational
My brother has MSUD. And he acts the same as the twins. Same facial features. Same walking in tip toes. Same sensitivity to noises, he even slaps his hands the same way. He had seizures and epilepsy as a baby and that led them to test him and they found the genetic issue. Is a mutation in one of 3 genes. And that doesn't let the process of certain lipids which lead to accumulated lactic acid in brain.
Diet is a big issue due to lipids not being process. But sadly cognitive delay is a part of it.
Is there part 2 please?
When I saw Jayden's new room without a screen on the window - ohh! that can be dangerous!
I have worked with many kids of different disabilities and my guess for the birthday song is that it's too loud and he's overstimulated. I wonder if he reacts to other singing like that of different songs. The parents are all so strong I commend them! Such a difficult yet beautiful job to have.
Amazing documentary! The children remind me of my disabled brother. The twins in particular seem similar to my brother who has Cri Du Chat syndrome. Their parents could test them for that if they haven't already.
I was wondering, if they are undiagnosed, do they qualify as disabled?
As time goes by, the parents will get old. Who will care for these children like how their parents took care of them?
The government
Sibling (if they want) or prolly government
What plans they have in place isn't your business
Gosh this is a nightmare. I feel so bad for the family....
This happens all over the world, not just Singapore
When uploading part 2
I was very worried about my brother as some people are against enforced habit making such as holding your child by force and brushing, but I also think it's a good thing to put a strong effort to develop some good habits even if it is hard for both the children and parents
Poor baby 😢
This is sad
I always wondered what happens after or when parents pass away or can no longer care for them??? What then? Will any agency or family member do as much as the parents?? Will they taken care of with as much love?
Nope
In the UK the government will look after them. Even when parents are still around the government helps - they have centers and house for them. I have actually worked for one and they get weekly allowances all depending of their capability. Some of them who are able gets a house of course all safety measures are given and a support worker would go check on them everyday.
I'm undiagnosed too
Where's the part 2?
Please Understand I believe brushing his teeth may be extremely painful for him / looking at his body language and the way he reacts/ He can't put this into words / I completely understand how important it is for his health to regularly brush his teeth / Maybe partial or complete tooth extraction may be helpful I understand that may bring a different challenge / but he may have great or extreme tooth gum sensitivity You seem to be extremely loving parents / with great strength and patience
Either take it or leave it to rot ?
All marvellous family's. Hey what normal we all quirky. Jo United kingdom. 😀
My son is of special needs. He is one of 300 kids with the syndrome. I'm worried if we have a second kid. That my child's sibling would be affected.
Maybe genetic testing can help
Usually it is over 50% chance that the other child will be too. I have an ASD kid and we stopped there.
Hey, man. Wish you strength and peace, I hope your son is well and you and your partner stay in good health.
@nada touma The percentage is much smaller than 50%. People who have children with ASD have a small percentage of having children again with it. Genetic testing determines the cause of it and usually it's not genetics. Truth is one in five boys that are born have ASD... which means just about anyone can have a child with ASD.
you could just try to adopt a child if you want to have a normal child. Or if it is companionship you need, it is good to just adopt a cat. Because cats are really cute. And I think that you will already have your hands full with taking care of 1 special needs kid, I think it is hard to have more children. A cat is lower maintainance than a child, but still provide a lot of play and companionship.
It's a risk and reward thing, so don't start crying about depression if you selfishly decide to have more biological children and mess up.
WHERE IS PART 2??
The twins are so tall