Special Care in Sarajevo

Lack of infrastructure and abundant apathy leaves most Bosnian children with special needs to fall by the wayside

News | Jenna Hand | May 2012

In a Sarajevo classroom festooned with pictures and charts, nine-year-old Harry Lindsay is chortling softly as he mimics his teacher. She’s almost as delighted as he is. "Do this, Harry," she says, stamping her feet on the carpet and clapping her hands. He copies with a flurry of actions and she gives him a sip of Coke as a reward. "Do this!" she says, tapping her nose until he follows her lead. It’s not an average lesson. But Harry isn’t an average boy.

A special programme at Mjedenica School uses cutting-edge behavioral science to teach pupils with autism and other cognitive impairments in a country where children with disabilities are more often sequestered than educated. Some of the pupils’ behavior is so challenging that no other school will take them. Their parents are berated in the streets for their perceived inability to discipline their offspring when in fact tantrums and communication difficulties are characteristic of autism spectrum disorders.

A handful are in state care and it’s unknown whether their intellectual delays preceded their neglect. One girl was found wandering the city, unable to say her name. A kindergarten child arrived hooked on alcohol and cigarettes. Both are now thriving on a rigorous curriculum that includes one-on-one instruction and the constant, forensic measurement of their progress on an array of graphs. In teaching circles it’s known as the Comprehensive Application of Behavior Analysis to Schooling.

The duty to make a difference

The driving force behind the programme, Nirvana Pistoljevic, could work in more glamorous places – she used to teach at Columbia University’s graduate school of education and was the assistant director of a research preschool. But the woman who returned to Sarajevo two years ago, having fled as a teenager during the 1990s war, feels duty-bound to her 70 pupils. "I feel it’s so bad here that any little bit of change is good," she says.

The collapse of Yugoslavia followed by three years of war devastated Bosnia, a triangular patch of land wedged between Croatia and Serbia. Today, pervasive ethnic divisions continue to stymie progress. Unemployment is an extraordinary 43 per cent and the current government is a brittle thing that only came together in the final days of last year, almost 15 months after its bickering members were elected.

Each of the Bosniak and Croat-dominated Federation’s 10 cantons has its own ministries of education, social welfare and health, as does the predominantly Serb Republika Srpska. The school systems cater to and reinforce ethnic splits by segregating children according to their identity and teaching them different curricula (Mjedenica is a notable exception, where pupils of all religious and ethnic backgrounds learn together). In such a chaotic context, it’s little wonder that education and services for children with disabilities are inadequate.

Families tend to fill the void. The mother of a child with cerebral palsy told Pistoljevic she had to have more babies, fast, because someone needed to take care of the child when she died.

When surviving is such a struggle, education is secondary. "The mentality here is that you don’t have to do much with a kid who has special needs because they’re written off," Pistoljevic says. "Special education is beyond poor. It has not advanced in the last 30 years in any way.’’

She feels it’s linked to a general lethargy. "People just accept the way things are. They have no energy to fight for anything anymore… They don’t fight for their rights and the rights of their kids."

A brighter future for some

Harry’s mother, Sanela Lindsay, did fight for her son when he was diagnosed with severe autism at the age of two, after the family moved from Australia. But doctors told her there were no suitable therapists and she should "read things on the internet" herself.

She says that once Harry reached school age, she realised the Government’s talk of inclusion did not amount to anything either. "They don’t do anything to provide services so those kids can be taken to regular schools."

Pistoljevic’s programme, which operates independently within Mjedenica school, has tripled in size in the past 12 months and has a waiting list. The Government pays for seven teachers but the other 18 are funded through grants (Lindsay drives fundraising efforts through a dedicated NGO called EDUS – Education for All). And while current grants will take the programme to the end of the school year, its future beyond June is uncertain.

Lindsay says Harry has made significant progress in the programme. "Before Nirvana was here, if I called his name he would never turn. He did not react to anything." She feared he would stay locked inside himself forever. But just one year on, he is starting to speak. "I was taking him from bed two days ago and he said, ‘too cold’… Every day there is something like that. For me that’s something really unbelievable."

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