TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Karina Moriljo (Carina Morillo): Ako želimo da razumemo autizam, ne smemo sklanjati pogled
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Karina Moriljo nije znala skoro ništa o autizmu kada je njenom sinu Ivanu uspostavljena dijagnoza. Znala je samo da on nije govorio niti reagovao na reči i da je ona morala pronaći svoje načine da se poveže sa njim. Karina priča kako je naučila da pomogne svom sinu da se ostvari deleći sa njim radoznalost.
Carina Morillo - Autism advocate
Carina Morillo is an advocate for the social inclusion of people with autism. Full bio
Carina Morillo is an advocate for the social inclusion of people with autism. Full bio
Double-click the English transcript below to play the video.
„Pogledaj me!“
00:13
"Look at me!"
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00:16
That phrase turned me
into an eye-contact coach.
into an eye-contact coach.
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Ta rečenica me je pretvorila
u trenera pogleda.
u trenera pogleda.
00:22
I'm the mother of Ivan; he's 15 years old.
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Ja sam Ivanova mama, koji ima 15 godina.
00:26
Ivan has autism,
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Ivan ima autizam, ne priča,
00:28
he doesn't speak,
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00:30
and he communicates through an iPad,
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i komunicira preko jednog Ajpoda
00:32
where his whole universe of words
exists in images.
exists in images.
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na kome je ceo njegov svet reči u slikama.
Saznali smo njegovu dijagnozu
kada je imao dve i po godine.
kada je imao dve i po godine.
00:37
He was diagnosed
when he was two and a half.
when he was two and a half.
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00:43
I still remember that day painfully.
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Još uvek se prisećam
tog trenutka sa mnogo boli.
tog trenutka sa mnogo boli.
00:49
My husband and I felt really lost;
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Moj muž i ja smo se osećali
veoma izgubljeno.
veoma izgubljeno.
00:53
we didn't know where to begin.
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Nismo znali odakle da počnemo.
Nije bilo interneta kao danas,
00:56
There was no internet,
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nismo mogli da izguglamo informaciju,
00:59
you couldn't Google information,
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01:02
so we made those first steps
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tako da su ti prvi koraci
bili čista intuicija.
01:05
out of sheer intuition.
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01:09
Ivan would not maintain eye contact,
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Ivan nije mogao da održi pogled,
01:13
he had lost the words that he did know,
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zaboravio je reči koje je govorio,
01:16
and he didn't respond to his name
or to anything we asked him,
or to anything we asked him,
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nije se odazivao na svoje ime
niti na bilo šta što bismo mu tražili,
kao da su reči bile samo buka.
01:21
as if words were noise.
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01:25
The only way I could know
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Jedini način koji je postojao
da saznam šta mu se dešava,
01:30
what was going on with him,
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da saznam šta oseća,
01:32
what he felt,
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01:34
was looking him in the eye.
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bio je da ga gledam u oči.
Ali, taj most je bio srušen.
01:37
But that bridge was broken.
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Kako pokazati Ivanu život?
01:42
How could I teach him about life?
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01:47
When I did things he liked,
he would look at me,
he would look at me,
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Kada sam radila stvari
koje se njemu sviđaju,
koje se njemu sviđaju,
tada bi me gledao
01:51
and we were connected.
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i bili smo povezani.
Tako sam se posvetila
da ga pratim u tim stvarima,
da ga pratim u tim stvarima,
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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i svaki put je bilo sve više i više
trenutaka da smo se gledali.
trenutaka da smo se gledali.
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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Provodili bismo sate i sate
igrajući se jurki
igrajući se jurki
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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sa njegovom starijom sestrom, Aleksijom,
i kada bismo rekli: „Ah, uhvaćen si!“
02:10
and when we said: "I caught you!"
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02:14
he would look around for us,
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tražio nas je pogledom,
a ja sam tada, u tom trenutku,
osećala da je živ.
osećala da je živ.
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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Takođe, držimo rekord
u satima provedenim u bazenu.
u satima provedenim u bazenu.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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Ivan je uvek imao
veliku strast prema vodi.
veliku strast prema vodi.
02:31
Ivan always had a passion for water.
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02:35
I remember when he was two and a half,
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Sećam se da sam ga,
kada je imao dve i po godine,
kada je imao dve i po godine,
jednog kišnog zimskog dana
02:39
on a rainy winter day,
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02:43
I was taking him to an indoor pool,
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vodila do zatvorenog bazena,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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jer čak ni tih dana nismo
prestajali da idemo.
prestajali da idemo.
Vozili smo se autoputem
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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i pogrešila sam izlaz.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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I tada je neutešno počeo
da plače, bez prestanka,
da plače, bez prestanka,
sve dok se nisam vratila na put
02:58
until I turned back.
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i onda se ubrzo smirio.
03:00
Only then did he calm down.
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Kako je moguće
03:03
How was it possible
that a two and a half year old
that a two and a half year old
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da se sa dve i po godine
nije odazivao na svoje ime,
nije odazivao na svoje ime,
03:07
didn't respond to his own name,
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ali da je usred te kiše i magle,
kroz koju nisam uspevala ništa da vidim,
kroz koju nisam uspevala ništa da vidim,
03:09
yet in the middle of the rain and fog,
where I couldn't see anything,
where I couldn't see anything,
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03:13
he knew the exact route?
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bio sposoban da savršeno prepozna put?
Tada sam shvatila da Ivan ima
izvanredno vizuelno pamćenje
izvanredno vizuelno pamćenje
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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i da će to biti moja ulazna vrata.
03:25
and that that would be my way in.
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Tako da sam počela da vadim slike svega
03:29
So I started taking
pictures of everything,
pictures of everything,
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i da ga tako učim životu,
03:32
and teaching him what life was like,
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pokazujući mu ih, sliku po sliku.
03:35
showing it to him, picture by picture.
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03:39
Even now, it's the way Ivan communicates
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I dan-danas to je još uvek način
na koji nam Ivan govori
na koji nam Ivan govori
03:44
what he wants,
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šta želi, šta mu je potrebno,
03:46
what he needs
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kao i šta oseća.
03:48
and also what he feels.
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Ali, nije bilo potrebno tražiti
samo Ivanov pogled.
samo Ivanov pogled.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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Takođe je bio potreban i pogled drugih.
03:58
Everyone else's did, too.
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04:02
How could I make people see
not only his autism,
not only his autism,
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Kako uspeti
da ne vide samo njegov autizam,
već da vide njega
04:06
but see him the person
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04:09
and everything he can give;
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i sve što on može da pruži?
04:12
everything he can do;
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Sve što on može da uradi,
04:15
the things he likes and doesn't like,
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stvari koje mu se sviđaju, a koje ne,
04:18
just like any one of us?
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kao i svakome od nas.
04:21
But for that, I also had
to give of myself.
to give of myself.
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Ali za to, trebalo je
da i ja uradim svoj deo.
da i ja uradim svoj deo.
Morala sam da imam hrabrosti da ga pustim.
04:25
I had to have the strength to let him go,
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A to mi je bilo mnogo teško.
04:28
which was extremely difficult.
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Ivan je imao 11 godina,
04:33
Ivan was 11 years old,
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04:35
and he went for treatment
in a neighborhood near our house.
in a neighborhood near our house.
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i bio je na svom tretmanu
veoma blizu kuće, u drugom kraju.
veoma blizu kuće, u drugom kraju.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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I jedno popodne, dok sam
ubijala vreme čekajući ga,
ubijala vreme čekajući ga,
04:44
I went into a greengrocer,
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ušla sam u piljaru,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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u tipičnu piljaru u kraju
koja ima pomalo od svega.
koja ima pomalo od svega.
I dok sam kupovala,
04:50
While doing the shopping,
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04:52
I started talking to Jose, the owner.
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počela sam da pričam sa Hoseom, gazdom.
04:56
I told him about Ivan,
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Ispričala sam mu za Ivana, da ima autizam
04:59
that he had autism,
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i da bih volela kada bi on naučio
da sam hoda ulicom,
da sam hoda ulicom,
05:01
and that I wanted him to learn
to walk down the street by himself,
to walk down the street by himself,
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05:05
without anyone holding his hand.
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a da ga niko ne drži za ruku.
I ohrabrila sam se da ga upitam
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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da li bi četvrtkom popodne
Ivan mogao da dolazi i pomaže mu
da slaže police sa flašama vode
da slaže police sa flašama vode
05:13
Ivan could come and help him arrange
the water bottles on the shelves,
the water bottles on the shelves,
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pošto je njega oduševljavalo slaganje,
05:17
because he loved to organize things.
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05:19
And as a reward, he could buy
some chocolate cookies,
some chocolate cookies,
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a kao nagradu da dobije
čokoladne kolačiće,
čokoladne kolačiće,
05:23
which were his favorite.
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njegove omiljene.
Odmah mi je rekao da može.
05:27
He said "yes" right away.
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05:30
So that's how it went for a year:
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I tako je godinu dana
05:34
Ivan would go to Jose's greengrocer,
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Ivan odlazio u Hoseovu piljaru,
05:37
help him arrange the shelves
of water bottles
of water bottles
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pomagao mu je da slaže
police sa flašama vode,
police sa flašama vode,
čije etikete bi savršeno poravnao
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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milimetarski sa svih strana.
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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I odlazio bi srećan
sa svojim kolačićima od čokolade.
05:56
Jose is not an expert in autism.
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Hose nije ekspert što se tiče autizma.
06:01
There is no need to be an expert
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Nije potrebno biti ekspert ni u čemu,
06:05
nor do anything heroic to include someone.
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niti postići nikakvo dostignuće
da biste uključili nekog.
da biste uključili nekog.
06:12
We just need to be there --
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Jednostavno treba da -
(Aplauz)
06:14
(Applause)
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06:22
(Applause ends)
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Tako je, nikakvo herojsko dostignuće.
06:25
Really, no heroic deed --
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06:28
we simply need to be close.
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Jednostavno treba da budemo blizu.
06:33
And if we are afraid of something
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I ako nas nešto plaši
06:36
or we don't understand something,
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ili ako ne razumemo, pitajmo;
06:38
we need to ask.
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budimo radoznali,
06:41
Let's be curious
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06:44
but never indifferent.
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ali nikada ravnodušni.
06:50
Let's have the courage
to look each other in the eye,
to look each other in the eye,
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Imajmo hrabrost da pogledamo u oči,
jer sa našim pogledom
06:56
because by looking,
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možemo nekom otvoriti čitav svet.
06:58
we can open a whole world to someone else.
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(Aplauz)
07:03
(Applause)
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(Ovacije)
07:05
(Cheers)
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ABOUT THE SPEAKER
Carina Morillo - Autism advocateCarina Morillo is an advocate for the social inclusion of people with autism.
Why you should listen
Carina Morillo is a founding member and president of Fundación Brincar, a non-profit organization in Argentina that has worked since 2010 for a better quality of life of people with autism and their families.
Morillo started Fundación Brincar -- inspired by her son Ivan, who is currently 16 years old and has autism -- because she strongly believes that although life with autism can be challenging, her family and others like it have the right to be happy. In spite of its high prevalence, most people still don't know what autism is about or how to help someone with autism. The foundation offers support services and training to families and professionals, community awareness programs and art and skills training for children, youth and adults on the autism spectrum. Brincar has trained more than 15,000 professionals and families, and it currently offers support services to more than 3,000 families throughout Argentina. The foundation's free virtual library monthly reaches 400,000 people per month throughout Latin America and Spain. Brincar is also founding member of the Argentina Network of Autism, and has become one of the leading autism references for both families, health professionals and teachers in Argentina and Latin America.
Morillo is actively working on the creation of an adult life platform for living with autism. Like many parents, her main concern is who will take care of her son during his adult life. Around one-third of people with autism remain nonverbal, and one-third have an intellectual disability, requiring 24/7 support throughout their life. Existing facilities and services in Argentina and Latin America are limited to school age, with no residence or occupation solutions for anyone older than 18.
Morillo has been awarded the 2016 US Ambassador in Argentina Entrepreneur Prize and the 2014 Argentine Solidarity Prize. In April 2017, Fundación Brincar was declared of Social Interest by the Congress of the City of Buenos Aires for its open community services. Morillo holds a BS in Business Administration degree of Babson College.
Carina Morillo | Speaker | TED.com