This is my son Balsa. I want you to look at his eyes: He is now using only 15 words
The biggest fear of parents is the moment when they will no longer exist...
- While you are waiting for a child, you imagine how will he look like, what will he love, what is he going to do. My wife, for example, dreamed about Balsa being a pilot. The diagnosis changes everything, it takes you on some unpredictable path, even with this diagnosis, people don't really know what is autism - said Blazo Kumburovic for Telegraf, the father of the boy Balsa.
Balsa is cute and a tall child. His dad said that he sings and dances beautifully. Balsa also has regressive autism. Only one picture in this text is not blurred because his dad wanted for people to see his eyes... To see that autism is not an anonymous syndrome, but it has a face. It is kind and of a child.
- Balsa has been developing normally like other children up to the second year. He used around 300 words, he watched cartoons in the English language, he slowly learned it and he told the mother before going to sleep "Good night mommy". And then, he became slower, more distant, in his own world. We refused the wrong diagnosis for a long time. That it is specific language impairment, that he is a boy, the boys learn slower. When we went to neuropsychiatrist, this syndrome was diagnosed - Blazo said.
Autism took away all hope that parents had for Balsa and it brought its own unsuspecting rules.
- The child can become better and better with constant work, but it additionally regresses, which happened to my son. Balsa is now using around 15 words, and 4 of them are maybe functional. He thinks in pictures, and he communicated by singing. Epilepsy and medications he takes in order to survive seizures contributed to this - said Blazo.
Every day is different, every change is difficult, but the worst thing is, the families are on their own.
- My wife and I aren't defectologists, nor doctors. We are running around, trying to find out as much as possible, to consult someone, to read, to achieve something like this, self-taught. We are lucky to live in the center of the state, we can take the child to the greatest experts. That is why I am thinking, what are the people from the interior doing whose children also have autism, perhaps they don't know how to reach information, they don't have the experts around them. What is the system doing for those children? - he wonders.
THE STATE RECOGNIZES US, BUT IT DOESN'T SEE US WELL
That is the fight with the system, for a society which is still not ready to accept different people, it is the second front line.
- The state recognizes us, but it doesn't see us well. The legal solutions aren't complete, and where they have them, you find discrimination from the officials who should apply that law. Non-acceptance continues in school. I don't understand the educators... They are not trained to work with children with autism. It is terrible when the first sentence you hear when you walk inside of any educational institution: "Have you tried special school". No, we haven't because that specialty is a fence which puts the line between the society who strive to fit in the world. They put them aside, and then one day in the year, on a school day, they act that we are an inclusive society, all the children sing a song. And playing together, photos, communication, excursions - nothing. Our children won't live in a special world. When they go to the shop, they won't be welcomed by a person like them.
The problem is also insufficient training of health workers. Pediatricians, according to Kumburovic's experience, cannot usually tell if a child has autism based on the behavior. Every day is important at such a young age.
- Or for example - people with autism can go to the dentist only through total anesthesia. Only the Faculty of Dentistry does that here. We went there and they told us "Come in six months, there is no room". What should we do for half or the year? "Give them some pain killers. Imagine, waiting for six months in pain! The child suffers like that!
THE MORE INTELLIGENT THEY ARE, THE MORE THEY SUFFER, THEY ARE AWARE THEY CAN'T COMMUNICATE WITH US
As Blazo said, in a situation like that, when there is so much misunderstanding, the family breaks apart.
- The amount of challenges you face is always greater than the support you receive. Those are the most simple things, which he did for 1.000 times, and he failed the 1.001st. When that happens, because something colorful distracted him, he understands that he made a mistake and he starts hitting himself in the head. Aware of the mistake and he punishes himself. The more intelligent the person is, the frustration is greater because they know they can't communicate - said Blazo and adds that those are the moments which fill up the parents with incredible sorrow.
- The wife and I are exhausted at the end of the day. We draw the tiny sparks of energy and we wonder how did we survive the day, to have a conversation about something which doesn't involve our sone. And we still get some energy to love each other, to get another child.
AUTISM IS A SPECTRUM, THERE ARE NO 2 PERSONS ALIKE
When you see one person with autism, you only see that person. There are no two identical persons with the same disabilities.
- That is why it is called the autism spectrum. A child can have hearing disabilities, everything else is alright. The second one has problems with motor functions. You throw him the ball and he can't figure out how fast it is going to catch it, so he avoids looking at it because he can't process the flight in his brain.
- The third person has "numb" fingers, they don't have developed the tactile function. The fourth one has a visual surplus, they can't look at any bright light, the fifth one has troubles with touch, you are touching their hand and they feel as if you are burning them with lighter.
THEY BECOME INVISIBLE TO THE STATE AFTER THE AGE OF 26
- The registry will show how many people there are and how big of problem autism is. Since 2015, the government has been convincing us that they will make the registry, which is not happening. The registry has to follow the national strategy and how to do this condition, and how to solve the problems. There is a plan of institutions which can give help. The help is determined for individual groups because the needs of children up to the age of 7 are not the same.
- After the age of 26, you lose the right to work and own property, no matter the level of autism. There are people who can buy, who can do something, but the system doesn't allow it. It is like someone has told them "No, you will be a plant and a parasite, and I will give a guardian to you, which will govern your property". In Ireland on the other hand, you can't take away anyone's ability to work without the consent of that person. But no one is asking you hare. They can work, but they lose the right to help, which is absurd.
And the greatest fear of parents is what is going to happen when they are gone, who will care about their children?
- WIll they keep him in some institution, tied up to a radiator? They will feed him with something disgusting and leave him soiled? Will they torture him, because he can't communicate? Every parent fears that. Our wish is to found an Association, which will in a legal way and with foundations fight for an inclusive living, where the people with autism will be able to do something productive. To make paper bags, to pick fruits, to make jams... to place their products on the market and to finance their life in such a way, with subventions of the state.
FATHER WHO DIDN'T LEFT
85 percent of marriages with a child with autism ends up with divorce. Most of the mothers raise the children on their own.
- I didn't run away, I just grew with a younger sister who had cerebral palsy so I helped her even when I didn't know that I was helping her. I remained and I will never leave. I try to be a good man, to spread kindness to the younger child and to teach it so it will grow into a good person, who will help his brother and who will love him.
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(Telegraf.co.uk / D.D.S)