It is difficult for families who have a child on the autism spectrum, and I think they are some of the most vulnerable families, said Radovan Dragnić, director of the Nikšić Day Center for Children with Developmental Disabilities and Persons with Disabilities, who organized a roundtable discussion on the topic "Current Problems of Persons with Autism" on April 2, World Autism Awareness Day.
"It's hard, but also challenging, interesting, because only when I had Sava did I feel like I understood what it means to be a parent and what it means to have unconditional love, even though I have an older son. With Sava, everything is different - it's hard, but you understand what it means to be a real parent and how much a child needs you," said Slađana Perunović, mother of thirteen-year-old Sava, who has autism.
Somehow it has become an unwritten rule that on April 2nd everyone remembers people with autism, and before and after that date, parents and their children are alone, Perunović points out.
"We are always hidden under a 'rock' somewhere, and there are too many of us. There are more and more children with autism, and no one to deal with it - to see why it is like this, how to stop it and how to help us and the children."
And they need help and support, he points out, from everyone – from family, society, institutions.
"Even we parents, among ourselves, don't have that support. We somehow keep this pain to ourselves and suffer. I think it's gotten to the point where we can't bear it anymore. We need help, especially us parents. We carry it all alone, we wander around and we don't get anything. We need support from everyone - from family, society, institutions. We parents ourselves are becoming antisocial, and the problem is too difficult for us. We need to have some kind of counseling center for parents, to give us support. We had that in Belgrade. We had a good psychologist who sat us down at a round table and told us: 'If it's hard for you to say it, write it down on paper. Cry if you need to, talk to each other for a bit, go out for a coffee, socialize a bit. We don't have that here," says Perunović.
Her son Sava attends the Olga Golović Elementary School with an inclusive education program. She explains that starting school is difficult for children with autism and that neither the children nor their parents have had any preparation.
"The child cries, screams, because he doesn't understand why he's there. We don't prepare children for school, but neither do the parents. When you stand there and listen to your child just screaming and crying, you wonder what you're doing. You feel like giving up. That's where parents need to be supported. You need to tell them: 'Go, try'. I taught my child to ride a bike, to swim, my child plays top-notch table tennis, and he's made a lot of progress. He's very sweet, loving, cuddly. If I had listened to some experts who told me that my child would get worse, I wouldn't have had anything. But, a mother's love started everything to get better."
She is full of words of praise for the principal of the Olga Golović school, Ivana Krsmanović.
"Thanks to her, who put the whole team at our disposal, our children had their first field trip two years ago. They had never had that before. They were always hidden."
And thanks to the Day Center and the dedicated work of the employees, children with autism, as well as other developmental disabilities, have become visible. Dragnić hopes that the situation will be much better when the Autism Center opens in the Nikšić settlement of Ozrinići, and he hopes that its construction will begin at the end of the year.
"We provided logistical expert support to the local government regarding the future Center. As we were informed by the Design and Planning Agency, the conceptual design is complete and the project is nearing completion. Part of the project has been included in capital investments and construction of the future Autism Center will begin at the end of the year. It will cover an area of 11 square meters, of which three thousand will be work space. It will be a facility that few have, not only in the region, but also in the Balkans. The capacity of the future Center, which will be adapted to users from our city, will be 200 users," Dragnić pointed out.
At the Autism Center, beneficiaries will have an extended stay, but the main problem of parents will still not be solved - where will their children go when their parents pass away.
"That is the question of all questions. We need to expand our services, and one of them is supported housing. We need to develop that in Nikšić and Montenegro. That service has proven itself well in the West, in Denmark and Slovenia, and we need to find a way to implement it in our law as soon as possible," emphasized the director of the Day Center, which houses 53 users, 16 of whom are on the autism spectrum.
In addition to parents and employees of the Day Care Center, the round table was attended by representatives of the local government, professional staff from the Public Institution "Dragan Kovačević", representatives of the Design and Planning Agency, as well as Dr. Snježana Dašić, president of the Commission for the Guidance of Children with Special Educational Needs.
Kovačević: We will continue to help people with autism and their families
The President of the Municipality of Nikšić, Marko Kovačević, said that in the coming period, the local government will continue to provide support to all people facing autism.
"In the previous period, the Municipality of Nikšić provided daily assistance and support to the Day Center for Children with Developmental Disabilities and Persons with Disabilities and started implementing an important project - the Autism Center, which will be built in Ozrinići. With these and other projects, we will help persons with autism and their families," said Kovačević.
Bonus video:
