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Raising A Child With Special Needs

by , 2nd Sep 2013

Luka was born without eyeballs, and all of a sudden a whole new path was opened in front of us, full of endless questions and challenges

I have always wanted to have a brother or sister, so I constantly asked my mother why all my friends from kindergarten and school had someone, and I didn’t. In fall 2012, my dream finally came true. I got my brother Luka. We all knew the arrival of the baby in our family would change our lives, but we were not aware that it would turn them upside down.

Two hours after my mom had brought Luka into the world, the doctor called and told her, in a harsh way, about the defect my brother was born with. She opened his small eye sockets and asked my mother: “Have you seen this“?

From that moment on, my family’s struggle has started.

Luka and the flower
Luka was born without eyeballs, and all of a sudden a whole new path was opened in front of us, full of endless questions and challenges.
I’m talking in the first person plural when I mention my parents and raising my brother, and this must seem strange to you. However, as a ten-year-old girl, I entered into a whole new world with them, realizing what was really important in life.

I also became aware of the fact that people and life can be cruel. I found out how patience and perseverance are essential for a child with special needs to have a nice childhood. This is especially true in a country like mine where awareness of the society about people with disabilities has not been built yet.

I cannot help but mention problem we have faced countless times; and not just my family, but also other families raising children with some form of disability: the doctors’ lack of interest, incompetence and general lack of willingness to tackle the problem and provide help and support that these children need in the earliest period of their lives.

There are lots of examples, but I will never forget the doctor who barely agreed, per my father’s request, to examine Luka, who was only a few days old. Then, how a mother should feel when she accidentally hears a doctor’s comment upon realisation that a child who does not see nor talk has been brought to him for an examination:

Out of all the doctors, why do I have to be the one who will examine this child?

Luka u zagrljaju 2

There was too much finger-pointing, staring and comments. It took our neighbours a whole year to finally stop parking their cars in the parking space for the disabled in front of our building that was reserved for the car in which my dad took Luka every morning to kindergarten and back. People cannot understand, or simply do not want to understand, the type of obstacles families with children with disabilities face. And when you think you have passed them all, another one shows up, out of nowhere!

Luka was two years old when, apart from his vision problems, he went through a difficult period due to the teeth growth and stomach problems. He has just started making his first steps and calling us, when everything stopped. He kept crying and writhing. We were constantly holding him in our arms, singing and swaying him, trying to help him as much as we could. At one point, he had 8 teeth growing all at once. He stopped talking and walking. It took my mom a lot of time to get him back on his feet. She took him for a walk every day, even when it was rainy and snowy. Each step was followed by a scream and disapproval, but only thanks to my mother’s persistence and patience, Luka was able to walk on his own when he was five.

At that time, my parents tried to involve Luka to work with a defectologist, but due to everything that has happened, it has been estimated that he was not cooperative. We abandoned the idea of going to school for the blind and enrolled Luka in kindergarten which had a special group for children with different types of disabilities. He protested at first, but he soon became fond of going to the kindergarten. Thanks to his wonderful teachers he started to accept other children. Spending time in the kindergarten helped him socialize and behave in a better way.

Luka swimming

This summer, Luka finished his first grade at the school for the blind in Belgrade, and I will write in one of my next blogs about the method of working with children with multiple disabilities, which has still not been adjusted to their needs and abilities. There are many children who, apart from the problems with eyesight, have some other disabilities, such as inability to speak, cerebral palsy, epilepsy, etc. This requires professional staff, modernization of curricula, and training of employees. Also, the institutions in our country should go hand in hand with, in this regard, similar institutions in developed countries and introduce programs that will provide training for children with multiple disabilities.

Raising a child with special needs is a great privilege, something that radically changes life and the way we look at the world. I’m happy to be Luka’s big sister who will always watch his back and, together with our little sister Kjara, look after him and guide him through life, trying to skip every obstacle that stands in our way. The biggest dream of our family is that Luka starts talking. Until then, if you hear: “Baba di!”, you will know that Luka is around!

3 comments

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  • terzic.igor08@gmail.com' igor terzic says:

    It is certain that children with special needs and deserves more attention those whose job is to take care of them in a way that their life easier as far as possible in this our those very conditions we have in this country.
    This is just one example of the multitude like him and as a society we need to ask ourselves whether spending time with those in your life denying something we do not like all the others , and such children must provide the excess of love that we keep for special occasions and cases that we should not leave you indifferent to all the problems and obstacles experienced by families with such children as shall be discriminated against and different treatments of any kind and concerned when it comes to the fate of these wonderful children .
    We parents need to be aware of the role they have in their lives and the fact that they should not be left to the mercy of fate to them by the unfair attitude to life, which will have to grow up accepting all its faults and shortcomings , using all the available resources to help such children and to enable as much as normal growth and proper development .
    We must learn how to behave towards those who, because of their lack of maybe a little marginalized in society and whose position is not exactly appropriate to their condition in which there are , so they have to provide all the possible ways a vast and immense support to engage in life in a way that it suits them and they can not stand in order to be more easily and thus we will participate in their growing up in quality people who will proudly be able to say that we were there when they needed it most .
    Our job and all the people in a society that does not forget and we do not close our eyes to the problems that these children are placed with major challenges that are not easy to overcome , and we have to allow mim that the path to your happiness does not seek only when they feel rejected and isolation , but every day to get the same amount of attention that they need for their socialization and inclusion in society so that they become equal members of the community to which they belong , and not be discriminated against because they were denied life for what we have and use in daily life .

  • drisley0302@gmail.com' Dana Risley says:

    Jovana,
    What a loving tribute to the difficulties that your family – and Luka have been through. He sounds delightful and he is so lucky to have you as his sister! I look forward to hearing more about his challenges and even better –accomplishments in life!

  • antoniocardillo@ymail.com' Tony Cardillo says:

    It is a shame how ignorance lets people act in very mean and misguided ways, but I believe that it is just that, ignorance. One cannot help but see the infinite grace of God when confronted with a special person like Luka.

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