Elma and her mom Sanja: There are several good people on which the world stands

With the commitment of parents, which, unfortunately, is the most expected, the system, as Sanja explains to us, depends on individuals, that is, the pillars of the support system are made up of individuals.

Kristina Ljevak for UNICEF
Djevojčica Elma i mama Sanja: Na nekoliko dobrih ljudi stoji svijet
02 November 2018

Elma is a ten-year-old girl, who goes to fourth grade. At our sunny October meeting, Elma arrived with a Cyrillic dictionary in her hands. Cyrillic alphabet is the next thing Elma plans to learn. Using the language of fashion bloggers, we will say that on that day the impeccable Elma's outfit was complemented with a decent bun for which, like for all other Elma's hairstyles, her older sister Esma is in charge.

Elma is happy with the school environment and she tells us that boys and girls are good, and we also learn about a special love she has for teacher Fikreta, who watches over Elma when her parents are busy.

She likes to play with dolls the most. Sometimes her sister Esma also plays with her, despite the fact that she is older. “Each of us has our own doll,” says Elma.

Elma was one of the faces of UNICEF’s “It’s about ability” campaign. We talked with her mother, Sanja, about the possibilities and ways of overcoming obstacles.

Adapt the system to children, not children to the system

“We need to be guided by the story of Italy and the Netherlands – when we plan to go to Italy, but the plane lands in the Netherlands by mistake. So, instead of expected sun and the Mediterranean, we see coldness, but the country also has its own beauty and advantages. Maybe you are not ready for them, but you get used to it,” says Sanja, adding how medical personnel should treat parents after they diagnose their children with Down Syndrome.

“It would be good to leave the medical terminology aside and engage in an intimate conversation with parents.”

After Elma was diagnosed with Down Syndrome, doctors told her parents that they were entering a different world.

However, it would be more appropriate not to deal with what is “different”, but to adapt the existing world to the needs of all its members, regardless of individual differences and abilities.

“A great and experienced doctor told us that this world does not necessarily have to be worse than the one which is more familiar to us. It is a world of children with disabilities, who have their own way of thinking and behavior, their rituals and their needs, maybe a bit different from ours,” says Sanja and adds that it is necessary to have as much information as possible in order to contribute to the creation of an inclusive environment.

One of the most demanding challenges is to find time to learn what Elma needs and then in a wide range of daily tasks to find time to apply the learned. “The results of the time devoted to learning outside the school curricula are absolutely motivating, as children absorb everything when they get enough dedication,” says Elma’s mom.

Djevojčica Elma i mama Sanja
Djevojčica Elma

Pillars of the support system are made up of individuals

With the commitment of parents, which, unfortunately, is the most expected, the system, as Sanja explains to us, depends on individuals, that is, the pillars of the support system are made up of individuals.

Some of them can be found in the “Omer Maslic” Health Center, where, as Elma’s mother points out, the great effort and professionalism of the pediatric department and its doctors, regardless of whether they are pre-school or school pediatricians, can be found.

Within the public health system, the speech-language pathology therapy is also provided for them in the Center for Hearing and Speech Rehabilitation and Physical Therapy in the Health Center “Centar” in Vrazova street.

Unfortunately, in the public health system, the optimal number of therapists from different areas are not hired, and parents often need to provide additional support on their own, which certainly includes additional expenses.

In addition to school obligation and extracurricular activities, physical activity is also required for Elma. The best choice was swimming and meeting with trainer Amel Kapo, as a representative of those on whose will the system survives.

Amel Kapo, a trainer for example

“Elma got scoliosis, and that is why we had to go swimming. Fortunately, as I have already mentioned good people, and on a few good people the world stands, Amel Kapo appeared with the Spid Association and a swimming club. I brought Elma to individual classes and then I saw children with disabilities, approached the coach Kapo, who told us to come for free. She goes swimming twice a week and has been swimming without any help for two years,” says Sanja.

To the statement that it is necessary to provide psychotherapeutic support to the parents of children with disabilities regarding the scope of obligations they have, mother Sanja agrees that her first contact with the Association “Life with Down Syndrome” had a therapeutic effect.

“The therapy for me was socializing. When I have the strength to make a call, the voice of Sevda Kujović is something I always remember when it is difficult for me. Her serene, serious, encouraging voice that told me to come whenever we want. The first visit was a kind of reversal, the first socialization outside the pediatrics, health centers and walks.”

In a society that is not inclusive yet and wherein schools there is no ongoing engagement of teaching assistants, Elma’s mother Sanja emphasizes that, fortunately, children and parents are ahead of the system and that the environment in which Elma is growing up, thanks to school friends and their parents, is the one that suits her happy childhood.