These are the words of Anita Čaušević of Bihać who raises twins Alem and Faruk.
Sixteen years ago, Faruk had birth asphyxia and ever since he has been struggling with developmental issues. The boy has been diagnosed with psychomotor development disability and autism spectrum disorder.
“When I say a struggle, I mean that you have to fight from the start to get the right diagnosis, so that you can give your child a normal life. You fight for your child’s rights guaranteed by law, but everyone turns a deaf ear when you ask for the rights your child is entitled to. Instead of enjoying in your child, you spend time in hospitals, desperate, because you do not know what to expect or how you can help your child”, explains Anita.
Faruk was born with cataracts on both eyes, so his eyesight is fairly impaired and affects other areas of his development. Faruk was supposed to start with physiotherapy immediately upon leaving the hospital, but the family were not instructed to do so, and that’s where medical staff made a major error.
“In order to catch up with what should have been done, we had a physiotherapist, Azra, come to our house and she helped me a lot. She taught me how to exercise with Faruk. In addition to the motor skills exercise, she taught me how to exercise logics. She prepared me for all that was awaiting us, and I will always be grateful for what she has done”, tells Anita.
Faced with a difficult situation, Anita and her husband did not waste time wondering why it had to be their child. They went on, as if everything had been all right. Anita soon quit her job so that she could fully commit to her child. And she has never lost hope.
"I exercised with Faruk every day trying to make up for what hadn’t been done the way it should have. He mastered the motor skill exercise pretty fast, but was unable to acquire logics and academic skills. I heard that a miracle had happened to some children. They started doing things they had not been able to do before. I recall waiting for a miracle to happen, and fortunately I did not have to wait for long. I realized that the miracle for me was when Faruk said the first word, when I first heard his voice. That was when I decided that I would be grateful for every new step he would make, no matter how small. I understood that his changes were small and slow, but to me and him they were huge”, says his mother.
Over the years, Anita and her husband have received ample support from their family and friends.
“Their great love and support helped Faruk calm down at the age of 13. From the very beginning, our mothers were a big support to me and my husband. They are still there for us. We also have friends who have always treated our son as any other child”.
But Faruk’s biggest support of all is his twin brother Alem. From their early age he cared about his brother and the two always knew how to bring a smile back to their mother’s face.
“At first, Faruk could not express his emotions and I missed that a lot. Luckily, I had Alem, Faruk’s twin brother, who filled the void. Faruk and Alem have an exceptional relationship. Faruk does not express himself verbally, unless he needs something. He loves music and likes to joke, so his brother is always there to play and cuddle. I know that Alem will always be there for his brother and that makes me very happy. Love has never left our home. Bit by bit, that love sparked emotions in Faruk, which he expresses in his own way,”.
Faruk is now 16. He has not acquired any academic skills. He likes listening to music and learns by listening.
Due to a poorly established inclusion system, Faruk never got a chance to go to school.
“When he was supposed to start school, he became very aggressive. Then I realized how cruel our system was and that parents of children with disabilities were left on their own. I was sad and bitter, but I had to lock away my pain and sorrow and focus on appeasing Faruk’s aggression”.
“That sorrow would bring no good to Faruk, or myself. We decided to have a world of our own. A world where we would have fun, laugh, and have things just the way we wanted them to be”, says Faruk’s mother, adding:
“What I do know for sure is that my Faruk has made us all better people. Just look at a child with disabilities rejoicing in little things, the joy and the broad smile, so benign. The whole world would be a better place if only we had a little bit of their modesty and genuine emotions”.
Last year, Faruk got a chance to develop his abilities and potentials when, with the help of Save the Children, a centre for the development of inclusive practices (CDIP) was founded in Bihać. At the CDIP children with disabilities have an opportunity to get a comprehensive support service in order to be better included in the mainstream education system.
“Having a CDIP is a very fortunate and great opportunity. Before it was founded, Faruk used to go to the association Sunce (Sunshine) and that was his only preoccupation. It would be good if the CDIP would consider organizing vocational courses because Faruk is already 16 and his needs are changing”, his mother hopes.
Anita says that she is particularly bothered when people pity children with disabilities and their parents. She believes that kids with disabilities do not need pity but a chance for inclusion into society.
“Why would they feel sorry for us? Our love does not differ from their love. We also carried our children under our hearts for nine months. Love is the same. The fact that our children need more time to achieve something does not give them right to label them different”.
In the video of “Svi smo #Mi djeca (We are All Children) campaign, Anita says: “Every child that has ever visited my house and socialized with my son became a better person!” She explains what she means:
“Hanging out with our kids is an opportunity for other children to learn how to share, to be more patient and sensitive. My family and I have treated Faruk from the start as if he had no disability whatsoever. It is exactly that sort of behavior that has helped Faruk develop emotional intelligence and stopped his aggressive behavior. When we go downtown or to any public place, I focus on him and don’t pay attention to whether someone sees us as different. And if I observe a prejudicial attitude, I can only feel sorry for that person, because it is them who are disadvantaged, not the child with disabilities”.
Watch video: https://www.youtube.com/watch?v=L4vFI-ao7Ew
In order for our society to rid of such prejudice, all levels should get involved, starting with those who introduced inclusion.
“Generally, our children are growing into young people and it is very important to draw attention to that fact. In order for our children to find their place under the Sun that they are entitled to, the entire community must join forces. When an adapted program for our children is designed, it has to be understood that, for example, a child with auditory impairment is not the same as the one who needs one hundred percent attention. This means that programs must be flexible and personally tailored. Children who need a personal assistant should have one. I would like to see all teachers get quality education and training for schooling children with disabilities, and this can be best achieved with the help of special educators and parents. Further on, it is very important to reach to parents of children without disabilities, to abandon prejudice and provide support to teachers, while helping create a healthy class environment”, our interlocutor explains.
Inclusion is guaranteed by international conventions and national legislation, and it is about time it was fully implemented.
“We do not need mercy, we need cooperation, to have our children included as actively as possible into society and education!”
Save the Children’s work: Inclusion is a right
Two centres for development of inclusive practices were opened in Bihac and Cazin in November 2016. These centres provide free services for children with disabilities and their families, as well as to education, health, and social welfare professionals in Una-Sana Canton (USC).
The centres introduced an innovative approach to working with children with disabilities, based on social model of inclusion. They are fully accessible for people/ children with disabilities in line with universal design principles, possess valuable resources of equipment and didactics, and they employ multi-disciplinary teams of rehabilitation experts.
Besides stationary rehabilitation services, they provide mobile outreach team support to education institutions for implementation of quality inclusive education. Both centres operate as knowledge hubs for dissemination of quality inclusion practices, support to relevant professionals, as well as for raising awareness about the importance of inclusion in their communities.
Centres for development of inclusive practices were set up based on the expressed need to innovate and re-organise system support to children and youth with disabilities. Save the Children has been supporting this process in terms of provision of financial and technical support through the project Community Based Services for Children with Disabilities.
For Save the Children, opening of the centres has been the highlight of their years-long cooperation with the Ministry of Education, Science, Culture and Sport of Una-Sana Canton. In 2016, the Strategy with a seven-year Action plan for inclusion of children with disabilities into the educational system was developed and adopted with support of Save the Children.
The type of support that the centres provide is planned through the Strategy, which contributes to their sustainability.
The project is implemented in partnership between Save the Children, USC Ministry of Education, Science, Culture and Sports, USC Ministry of Health, Labour and Social Policy, USC Health Insurance Institute, cities of Bihac and Cazin, and municipalities of Sanski Most, Kljuc, Velika Kladusa, Buzim, Bosanska Krupa and Bosanski Petrovac.
The project is a part of regional initiative of Save the Children, which, along with Bosnia and Herzegovina, is simultaneously taking place in Albania, Kosovo (under UNSCR 1244/99), Armenia and Georgia. The project is financially supported by Margaret A. Cargill Philanthropies.