Co-written with Chiara Bassetti, Global Communications Intern
Santiago is 5 years old. He lives in the city of Vlora in South West Albania with his parents and his older brother who is 9 years old. His parents came to Vlora from another city in Albania in quest of a better life. However, to this day, they remain unemployed and rely on the financial support of their relatives.
Up until now there was no public centre that offered supportive services for children with disabilities in Vlora. It had only one residential centre for persons with disabilities, which was private and required the parents to pay for this service.
Santiago’s mother knew that something was not right with her smaller child as he was not responding to any form of communication with her. She compared Santiago with her older child and noted that their developmental progress was very different. After raising her concerns with the paediatrician during a routine visit, he told her that no two children are the same and that even if he was autistic there is nothing to be done until Santiago is 3 years old because only at this age can he be diagnosed.
Following this meeting Entela, Santiago’s mother, then decided to do her best and to help her child with information she found online. It was difficult because she did not know what to do; how to speak to him; how to provide him with proper therapy. They could not afford paying for this and none was available for free.
At the age of 3 Santiago was finally diagnosed with autism spectrum along with mental retardation. His mother decided to register him at the kindergarten but, due to being afraid he would be discriminated against, said nothing to the kindergarten teacher. What Entela did not know was that the public kindergarten that Santiago was registered at was one which Save the Children support in promoting inclusive education in collaboration with local partner Medpak.
Santiago started going to the school; still not speaking a word and spending most of the day isolated, playing by himself and not socializing. His behaviour raised the concern of the teachers who informed Santiago’s mother. During this meeting she finally opened up to them and was relieved to find that that Santiago was entitled to have a support teacher due to his diagnosed intellectual disability.
Behare, Santiago’s support teacher, is trained by Medpak and prepared- along with kindergarten teachers and Santiago’s mum- a personalized education program for Santiago. After they started working together the young boy learned how to say words by using syllables and incorporating short expressions into his developing vocabulary. He continues to receive support in the kindergarten today.
Persons with disabilities represent approximately 15% of the global population and can go up as high as 25% amongst poor people. In Albania, the education law guarantees the right to education to all persons residing in Albania- yet national data fail to provide a clear picture of to what extent these rights are being honoured.
At Save the Children in Albania we are campaigning to ensure that children with disabilities have equal access and opportunities. We want all children with disabilities to be able to attend and progress in the public education system. We are striving for an inclusive society that accommodates all needs, so that children like Santiago can go to school, grow and develop alongside his peers.
In Albania 39% of children aged 6-15 and 60% of children between the ages of 15-18 are outside of education largely due to inadequate funds, lack of infrastructure and accessibility. Moreover, a social and discriminatory environment often propagates these patterns of exclusion. Our efforts in Albania include the provision of high-quality, community-based, multi-disciplinary rehabilitation centres for children with disabilities, working with local partners in rural kindergartens and schools.
Together we can learn how to help children be accepted and become active members of the community- on equal terms. It reveals how: where there is support, there is also hope. There should be no limit to children’s desires and the dreams for their future. We are campaigning in order to ensure that it remains just so.
On Monday the 21st of November we inaugurated the first Community Centre for Children with Disabilities in Vlora which was rehabilitated with funds of Save the Children and will function on a daily basis offering speech therapy, group therapy and individual therapy for children like Santiago. Santiago will be going to the centre to receive services. He had visited the centre and it already felt like home; Santiago was comfortably playing in his new environment and interacting with another child.
In the centre Santiago doesn’t have a favourite toy – he just likes new things. He opened all the toys and was running around playing with balloons. Although he doesn’t look you in the eye, here and there he says a word; “ball, playing, bricks.”
Entela confides: “I want my child to reach his full potential, I want him to progress and become someone. I know that he is different and he will never be like everyone else and I don’t mind. I just want him to be educated and happy”.
With Santiago going every day to the kindergarten she is now going to the University herself believing that it will enable her to find a job.