Shifting Great Expectations: Parenting a child with Down Syndrome | Lito Ramirez | TEDxColumbus
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- Опубликовано: 4 дек 2016
- In this talk, he explores the changing nature of expectations we have for our children, especially when they are born profoundly different than you expect.
Lito Ramirez is CEO of DownSyndrome Achieves, a charitable research organization that champions the development of critical research capabilities needed to better understand Down syndrome and to accelerate breakthrough discoveries. In 2015, DownSyndrome Achieves launched an innovative partnership with Nationwide Children's Hospital to develop the first centralized and dedicated biobank for DS research.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx
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I had no idea the termination rate was so high in the US. My daughter doesn’t have downs, she has a spontaneous mutation that causes intellectual disability, and seizures in 2/3 to 3/4 of the kids. I’m fairly sure that had I known while pregnant I would never have terminated, but who knows for sure?
She is everything to us. Our family is so much richer and happy with her in our lives. She is a walking ball of happiness, and the most empathetic person I’ve ever met. I am thankful for her as well as my older son every day. Life without them seems unlivable.
That's beautiful 💜
great. I am father of 3 years down syndrome child. a great joy and happiness
he is hero of my life
Leax atoaf
Adam boact
thats so wonderful to hear
I am a mother of a child with Down Syndrome, and I had no idea about the relation of Down Syndrome and Alzheimer's. Wow. Will be doing some research on this.
I wonder if part of it is due to the deprivation that people with DS have been through historically and if rates will go down with decent educational and occupation opportunities and healthy stimulation
His statement of 100% developing it is false! It's 50% in lifetime
Just a curiosity
.... Is your down syndrome child aggressive when he's not on medication???
Thank you for your contribution to this important research ❤️
Someone who shies away from having a child with disability by choice needs to realise that, first, any child - disability or not - is a challenge to bring up. What with the unique personality each person has. Second, everyone of us has limitations and deficiencies of one type or another. We're not good at everything, and we depend on one another to live our lives. Third, getting a disability is a lifelong risk for everyone of us. Lying in bed can predispose you to getting a disability as much as being in a vehicle accident. Eventually, at one time or another, everyone will get a disability - it's the reality of aging. As such, let's develop the emotional fortitude to face the challenge that may arise in others, -the children born through us, or on ourselves - through accidents, degeneration or occupational hazards. Question to answer: when you do get a disability, would you want your dear ones to dispose of you to institutional care or would you prefer the care of family and friends?
Deep. Thanks for sharing
I'm so proud of my son for each thing hes done hes my sunshine who needs to win the lottery. I have
you all probably dont care at all but does anybody know of a method to log back into an Instagram account..?
I somehow lost the account password. I would love any tips you can give me
@Brysen Jasper instablaster ;)
People should know:
“Among those surveyed, nearly 99% of people with Down syndrome indicated that they were happy with their lives; 97% liked who they are; and 96% liked how they look. Nearly 99% people with Down syndrome expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with Down syndrome felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life. In our qualitative analysis, people with Down syndrome encouraged parents to love their babies with Down syndrome, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome. Overall, the overwhelming majority of people with Down syndrome surveyed indicate they live happy and fulfilling lives.”
Melissa Oiler and Mike Oiler
Danielle Pullin and Luis Steven
Misty Brown and Scott brown
Megan Ellis and Mike Ellis
Michelle Story and Kevin Story
People with Down Syndrome can do awful things, be bullies, just like anyone else. Even as children (I speak from experience). Let's finally stop calling them "angels"... if you can't see that, then do you really know someone with DS?
They are humans too.
True.... They can do awful things... Sometimes is very depressing..... My son is down syndrome and is very difficult sometimes to deal with it.... Sometimes they very loving and caring.... But sometimes no..
@@anifatarmamad2144 Thank you for your comment. That is exactly the Truth... and to 'hear' it from somebody who knows too... is very healing for me after all the years of abuse I went through. So, simply, thank you.
Get off these threads and stop crying to the internet, no one cares
This is so true, some of them are very mean 😒. Some years ago I met a girl who had DS and she was very spoiled, one day my boyfriend and I were in a hurry but our car keys had disappeared and guess what?
Yes, she had hidden them and we had to take a taxi, because she didn't want to tell us where our car keys were 😢
100% Alzheimer's that's false! it's 50!
I believe it'll drop with proper education and occupational stimulation
This for my character. But I'm trying to make it too real, I'm trying to make it more recognizable saying "Doofhead".
What?
I don’t know about you guys but if my child was diagnosed with any disability that requires me to be there 24/7 for the rest of my life I would choose abortion or adoption if the first choice is not possible. I’m not nearly patient enough to care for a kid with special needs not wealthy enough to pay for the medical bills and not strong enough to deal with the reality of it all. Normalise choice. It’s not just the baby’s life that matters it’s also the quality of life the parents will have after the birth. It’s all emotional but romanticising situations to make myself feel better was never my thing.
The thing is, all of it depends on your ability to have faith that no matter what life throws at you, it also brings with the trials it’s means. Anything hard enough changes and matures you so that you can tap into a richer fuller life. To a lesser extent, why do people set challenges like ultramarathons and things that are epically difficult? No one sets a challenge they think for sure they will overcome, or else it’s not a challenge. It’s the whole point. But it only works if you welcome a certain amount of faith and optimism. Not to mention that some will only find out about the diagnosis at birth. And some even CHOOSE to adopt children with disabilities. I sense a lack of self confidence rather than clear awareness. And ton take it the wrong way please, I just really think that anyone can overcome anything if they are open to the possibility.
@@rabiaalaroui faith? It’s a matter of dealing with the reality of the situation not a religion thing. I don’t think you can comprehend the difficulty of the situation, being emotional is not going to make it any easier. It’s the numerous hospital visits the countless times a kid needs to be poked with a needle, it’s not just learning disabilities Down’s syndrome comes with a “package” of other issues like heart problems and kidney problems. Imagine having to eat a handful if pills for breakfast every single day for the rest of your life. It’s not just the fact that they are alive but what kind of life is that when all you do is hospital visits and getting poked around with needles just to make sure you won’t die anytime soon. As a parent I would never be able to cope with it and I am not religious I prefer to address my problems directly not via god. So no for me at least it’s not a matter of faith because it’s a disorder with no cure and to relief symptoms you have to make sure everything is being done correctly. Sure not every kid will have the same degree of severity and some can be quite easy to manage but relying on luck was never my cup of tea.
They do have programs that are paid for and many more that covers the expenses of a child with disabilities even medi- cal depends on the state ur in ... But their a true blessing bcuz my son has down syndrome thank God termination never came to my mind 🙏 I love him so much ❤️ we get all the help we need with them in school wise like outside school programs & many more ... Their very smart kids 😊😉
@@itravelforfood2644 i didn’t mean faith in the religious sense but faith as trust or confidence. To each their own. There are a lot of testimonies of parents who’s grown up child has Down syndrome and it is nothing like you describe it. So don’t assume anything, it’s just your opinion and it’s not everyone’s reality. As a matter of fact, it’s not even your reality because you don’t have a child with Down syndrome so all you’re doing is speculating based on your untransformed self « pre » challenge.
@@angelicabenavides923 that’s amazing ❤️ stay blessed