JOVAN ONLY ONE IN WORLD WITH SUCH GENE MUTATION! Mother: ‘They said he won’t walk, talk…’ AND IN ŠABAC WE SAW THIS!
When he was born, no one gave Jovan a chance – he wouldn’t walk, or talk, or function in any way. Because he has a rare and severe genetic illness – the Cornelia de Lange syndrome – and is a child with a disability. The only one in the world with this particular gene mutation. But above all, Jovan is a special child that touches your heart. A child that has defied all the dark prognoses and who is now in the fifth grade! And his homeroom group V/1 are all adult-sounding children who can easily teach us lessons on empathy and humanity in these dark times.
The Jevrem Obrenović Elementary School. Šabac. Recess. Music over the PA. Crowds. He is getting through the crowd ahead of his mom.
“Jovan likes to dress elegantly, but today he has a PE class, so we had to put on a tracksuit,” his mother Ana Vučinić says, smiling.
“But he is still handsome,” at which point the little boy throws his chest out.
We are going to a class held by their homeroom teacher, Natalija Bajić. She teacher German.
“He studies both German and English,” Ana starts off, and seeing our shocked expression, she says:
“He only writes in the Cyrillic alphabet, so the teachers tell him how each word is pronounced. And then he notes it down.
The nipper is now already dancing.
We go in. Jovan sits down in the first row. Next to his Olyka, as he calls Olja Gajić, his personal companion. A woman who is like a mother to him. The camera of our Kurir Television follows. The youngsters race to get in front of it.
“Our Yoya, as we call him because we like the nickname, is very good. I remember that once, in the fourth grade, we played a cooking game in a PE class because he wanted to be a cook when he grew up. We’d imagine the food and then make it,” says a friend of his, Marta Ivanović, while Petra Vuković adds that her Yoya is there even when the others are gone.
“When no one wants to play with me, I mean, when everyone plays games that don’t suit me, Yoya approaches me, asks me what’s the matter, and makes me happy.”
Grandma Dragica
‘He was even alone at school a few days at a time’
His grandmother Dragica has been Jovan’s great source of support since he was born.
“We take him to see a speech therapist, a defectologist, we even go private, to make sure he achieves as much as possible. At hospitals, they see him in 10-15-minute slots, whereas in privately owned institutions it’s an hour. I work in shifts, so either my daughter or me is always with him. She has multiple jobs to be able to finance all this, and she has another child too. But he is obedient, reasonable, and I can prove many points to him,” grandma Dragica says, adding that a few times he has been at school without an assistant.
“When Olja was ill and couldn’t be with him, he would spend three or four days alone at school. And everything was alright.”
Yoya went with them on a school field trip to Mount Tara.
“When we can’t get up, Yoya wakes us: “Get up, we have to eat!” “And when we’d take walks, and just couldn’t go on, Yoya would be there, saying, ‘Come on, Tamara, we have to go on. Just a little bit more,’ “ Tamara Ninković reminisces.
“Friendship is priceless,” says Tea Kostadinović, “and you can’t put a price tag on Yoya.
“We should care and watch over him just like he cares and likes us.”
Jovan’s mother Ana has sat in the corner, at the back desk. Tears are running down her cheeks.
“When we get a bad mark, Yoya always keeps our spirits up. Some even cry then, but he says, ‘It doesn’t matter,’ “ says Anja Pavlović as Nika Aleksandra Marković tells us how they can confide in him.
Nikola Živanović talks as well about how Yoya is a true friend, and Sofija Šarčević says that Yoya has a big heart.
“I wish he were my brother,” someone says from the other end of the classroom.
It’s Michaelmas. And the summer is still nice and warm. Strahinja Tomić is at the front, where only a passage separates him from Yoya. He was supposed to stay home today.
“It’s my family’s Saint’s Day, but I’ve come out of respect for Yoya,” he says, smiling and adding:
“Of all the people in my homegroup, I spend most my time with Yoya because we live near-by. I go over, he shows me how to play the guitar and the trumpet, and then we ride bicycles,” Strahinja says. When we joke about him whispering answers to Yoya when a teacher examines him, he blushes and gets confused.
“Our homeroom group doesn’t cheat.”
Aleksandar Končar
‘The trumpet is very demanding’
“The two of us have been working together for almost two years, and we enjoy it. What he does is special. We don’t push him too hard, we try to make sure he enjoys it, do as much he wants and can do, and work following a special programme. The trumpet is pretty demanding anyway. It requires the work of the whole body, from the posture – how a child stands, how it breathes – down to the fact that the lip muscles have to be in the right position. It’s not easy at all. Earlier, you started to learn to play the trumpet in the fifth grade, and since a few years it’s from the third grade. And Jovan has taken up the trumpet. What’s most important for him is that he enjoys everything,” Aleksandra Končar tells us.
Of course, Yoya works according to a special programme. But that presents no difficulty for V/1. On the contrary.
“Each homeroom group should have their own Yoya. They are all different, everyone has a different home upbringing, but it is Yoya that connects them all. When I took over the homeroom group from teacher Dejan Makević, he told me that Yoya is the glue that binds everything together. Yoya brings out the good in them all. Now they are like a school family,” the homeroom teacher says.
And they are a family, and Yoya is their child.
“When we played family, I was his grandfather, Tea was his grandmother, and Tea his aunt. Tea was making mock-cabbage rolls. She would take a leaf and put some herbs on it, and then we pretended to eat them. When Yoya was full, I pretended to take him out to the park: ‘Here’s some money from your grandpa,’ and then we would use leaves as money,” Vukašin Pajić says standing up, and adding:
“Once, in a PE class, we had a wedding, when Yoya and Tamara got married.”
The best man calls from the front row. And the maid of honour is close by.
But they don’t only play at school.
“Yoya gets invited to birthdays too. Everyone helps him. For example, a couple of days ago, they helped him in an arts class – they were drawing a tree,” says Jovan’s mom as she gets up from behind a desk and stands before the homeroom group. She is excited and can hardly talk.
“I’m very happy, you have moved me tremendously. I knew you were wonderful children, but this… I would first of all like to thank the V/1 parents because they have taught these children goodness and empathy. And the teacher, who was an excellent coordinator of this group in the first four years. As a mother of someone who has needs that are perhaps a bit different than the rest of the children and certain developmental disabilities, I’m happy and content that he is accepted. Of course, he wouldn’t be able to get an education if he didn’t have his personal companion. Olyka has been with us for four years already, and she is a person I trust – a motherly type,” Ana says and adds that it was no accident that they are at The Jevrem Obrenović Elementary – she chose it because it has an excellent team of experts – psychologists, pedagogues, defectologists, as well as the teaching staff, so the boy has acquired a certain amount of functional knowledge. But all this wouldn’t have been possible if this woman hadn’t bravely faced up to the terrible fate – her own and that of her son. She is a psychologist, and works several jobs to make sure Jovan is who he is now, which, as many have been surprised about, had seemed unattainable. At her home, she only has a mother, who provides immense support, and an 18-year-old daughter. Three women who can do anything!
“When he was born, they told me he wouldn’t walk or talk, that he wouldn’t be able to function. Looking at the baby at the time, my motherly instincts told me it was going to be alright. Lots of effort and work have gone into it, including working the speech therapist and defectologist, motor skills exercises, and the music school. It’s meant a lot of sacrifices by us as a family, but it’s all for a higher goal. We have taken Jovan to his maximum. We are proud of what Yoya has become,” Ana says, who has dedicated herself to children with developmental disabilities and impairments through her foundation, and who now sends a message to all parents to listen to their children, follow their needs, and everything will be alright in the end.
Duško Bojić
‘Yoya is the school’s symbol’
Halfway through the class, Duško Bojić, the principal of The Jevrem Obrenović Elementary, walks in. He sits at the back row od desks. Until a few days ago, he did not know who Jovan Vučinić was. It was just one of the hundreds of names of students he does not know. But he knew who Yoya was from day one.
“Yoya is the school’s symbol. Inclusion at this school runs broad, and Yoya is the best possible example. He is not the only, or the first student who is a bit different than the rest of the children, but we treat him as an ordinary child,” Bojić says.
Ana gives a hug to Jovan, and the youngster beckons to his Olyka to come over.
“You cannot not love Jovan. A child whose smile makes you forget your problems. Olyka will do anything for him. You know, he wrote an essay about a magic pen and said that Olyka was his magic pen,” Olja says, smiling.
So Jovan asks Olyka to do the exercises for him in PE classes. He doesn’t like them, his mother says. He’s come to a point where, to the joy of his mom nonetheless, he uses the goodness of eveyone around him.
“So, one friend carries his backpack, another his jacket, a friend jumps up when he drops his pen. But he can do all these things. Yet, he realized that others can do those things too, that he didn’t have to,” Ana says, smiling.
The bell signals the class is over. Everyone sees us off. They make a heart in the school yard with their bodies. And their Yoya is in the middle.
We part for just a few ours. Until the trumpet lesson. We meet up in front of The Mihailo Vukdragović Music School. His grandmother Dragica Cvejić brings him, and his teacher, Aleksandar Končar, is waiting for him on the first floor. Jovan unpacks his trumpet by himself. Then he puts on the mouthpiece.
“Let’s go, note ‘ti’,” says the teacher.
Jovan presses the valve. Moving on.
“Now something a bit harder. Note ‘so’. The first and the third valve…”
The boy is doing everything. Zoran is taking snapshots. Now he’s gotten used to us. He wants to see the pictures. It’s good, he says, pointing with his finger. Then he asks that we take a picture of the trumpet. Then of me.
“That’s enough. OK, go,” we start to talk.
He strikes a pose for the end and sends kisses.
He loves the trumpet. He wants his class back. When we finally go to the door, he makes the sign of the cross and says, “Thank God.”
So long, good boy…
Jelena S. Spasić