In “Milosardie” they do not tell me what my child cannot do, but what she can
Viki has a rare genetic disorder, one of those easy to establish, but on the other hand it has such a diverse and large-scale manifestation that there are no two identical cases. There are just few children with Charge Syndrome in Bulgaria. Viki’s uniqueness makes the search for support and the opportunity to exchange experience a particularly difficult task. But her mother, Stanislava, has never stepped back. She has found her island of peace where they know her anxieties, fears, joys and hopes. For 10 years, her daughter has been visiting the centre for children with special needs “Milosardie” at Caritas Ruse and Stanislava, with a smile on her face, says she and her daughter have found the “right place”.
Today, Viki is 16 years old – “with ID card and pension”, as her mother often jokes, and for the second year she has been attending a specialised cooking class at an ancillary school in Ruse. “We are very pleased with it. When I saw the class teacher on the very first day, I felt relaxed,” Stanislava says.
Although Stanislava does not believe the woman’s place is behind the stove, Vicki has made her own choice to learn to cook. “She has taken this decision on her own, with much passion and strong will. I have trust in her and did not make a mistake.” Her mother is proud to explain that her daughter is doing well and can now peel cucumber and zucchini, folding napkins.
Before going to the Caritas centre, Viki attended a specialised care kindergarten, but the serious work only started in “Milosardie”. A psychologist, a rehabilitator and a speech therapist are working with her. Vicki’s goal is to improve her spoken expression. She has a rich passive vocabulary, she knows a bit from everything – to read, to write, some knowledge of the world around, but it is difficult for her to express it. That’s why the greatest joy for both mother and daughter is when a stranger understands what Viki says. This is a real victory for the girl who pays great efforts to improve her articulation.
At home, Viki is like any other child. She helps a lot to her mother, makes her own room and helps with the housework. They work jointly to brush up her speech so that she can communicate freely with other people in the community. It is also associated with Stanislava’s dreams: “Learning to communicate is the most important thing for us. We won’t be here forever and she must be able to communicate with others. It will help her connect with people”.
Everything can be learned, but it takes hard work, both at home and in the centre. In “Milosardie” Viki gets socialised, becomes part of the community and befriends other children and Caritas employees. The same applies to Stanislava. Although she has not lost her social environment, as it often happens with parents of children with special needs, in the Caritas centre she finds outspoken understanding and support when she mostly needs it.
Stanislava’s biggest concern is what will happen to her child when she is left on her own – full-age, low-paid, parentless adult, with no one to take care after her. This terrible fear disturbs the sleep of thousands of parents in Bulgaria and the state should consider action in this direction. According to Stanislava, the most appropriate solution would be for the municipality to provide one of its vacant buildings, where NGOs can build day care centres for the elderly with disabilities. There they can develop social activities to enable attending people to develop and socialise.
There are still many difficulties and challenges facing children, although there is a change for the better in the society. Stanislava remembers there was a time when it was very difficult for the community to accept them, mothers were dragging their children away from Viki, but it did not make her quit. She is not isolated from society, neither she kept her daughter locked at home. Slowly and gradually, people on the streets started accepting them normally. They are not limited to the school community – the day care centre. They have friends to go out with. Isolation will come later when she completes school when Viki officially turns “full age” and will no longer be able to use the centre services. So it would be great to have a day care centre for adults where to spend a couple of hours and continue socializing.
Stanislava has never stopped believing it is feasible. She looks positively at what is happening in social services, being charged with solar energy at the Caritas centre, which gives her the confidence that things are happening.
“For me, Caritas is a wonderful, sunny place. It is the way I describe it to my friends when I tell them what we do in Milosardie centre. Here, they do not tell me what my child cannot do, but what she can and should be done,” Stanislava says with a smile.