Mari Korkotadze, 35, Tbilisi
„Data is my first born. He is now eight. I had a nice, peaceful life, raising my kid, then I gave birth to another child and when my younger kid was two months old, s/he was so active and communicative, that I started comparing her/him with how Data used to be at that age, wondering why Data hadn’t been like this. The age difference between the children is three years. As Data was my first child, I was inexperienced and I though this is how it should be. I have him regularly checked not in a polyclinic, but in a private expensive clinic.
I took him to the doctor regularly and the doctor repeatedly told me the child was all right even though his birth had been premature, delivered via C-section and I was always worried because of that, I did not want to miss anything. However, the doctors reassured me there was nothing to worry about, so I relaxed. Later, when I started comparing my children, I thought the younger child was more opened up, Data was not like that. Even later, Data developed a challenging behavior.
Initially, he was very quiet and reserved, but later developed hyperactivity. Two and a half year old could not speak yet. Despite this, he was a very smart kid and I did not realize that there could be a problem. The doctors told me it was normal as boys generally start to speak later. Back then, there was no information about autism, even the doctors did not know anything about this condition. When Data was sick and I called ambulance and told them he was diagnosed with autism, they asked me what that was.
That Data had autism, I discovered quite by chance. Surprisingly, a doctor in a policlinic suggested it when I took him there for vaccination. When the doctor saw Data’s behavior, s/he asked me if I had consulted a neuropathologist. I was going to anyway because I was already quite troubled by his behavior. This doctor told me: “The kid does not need a neuropathologist; I will readdress you to the right doctor.” So we went to see a child psychiatrist. I expected to be told that there was nothing wrong with the child, but what I actually heard was so shocking I did not want to live.
My child was three years and four months old when he was diagnosed. We had lost two years because the neuropathologist, by the way, a quite famous one, had failed to identify that the child had autism, had not ever asked me if the child called me “mamma” or named his facial features.
The doctor who diagnosed the child told me that he would go to school, but in a special school at the age of 8-9. When I came out of the doctor’s office, I hugged Data and we cried together. I thought of going outside and getting run over by a car. I had no idea what I was dealing with.
Then I started searching the Internet for information. There is a video on YouTube listing all the people who had autism. This video left a great impression on me. It gave me the desire to live. I was like reborn, filled with hope that our case was not lost and my child could achieve something. Then I took him to another specialist, finally a competent one, who started ABA therapy, i.e. Applied Behavior Analysis, and I could see progress in only a month’s time. I made up my mind to follow this treatment. Since then, we have not ceased this therapy, and in addition, we go to speech therapy, speech pathologist and swimming. Autism is a complex condition and it needs a complex treatment.
You need to take the child to kindergarten and then school. The school that was recommended to us was on Vera and I had to take Data from Mukhiani to Vera. The way we took to school every day, was extremely difficult, as we had to change three transports – the Subway and two buses. In the beginning, Data was stressed by going out in the street and taking public transport. We have often got off public transport because the passengers were irritated at his crying and behavior.
One day I attended a training about the rights of the people with disabilities. The training was so inspiring that I realized and decided that I don’t have to get off a bus because my son actually has the right to take the bus and the Subway. I mean public transport is packed with so many different people that you can never have convenience and if you are seeking for convenience you must get off and take a taxi. This transport is for everyone – for the children with autism and the children with typical development!
We finished the kindergarten and it was time to go to school. As Data is hyperactive, I hoped he would stay at least 10 minutes in the class. I was beyond happiness when he went to school with flowers in his hand on September 14 and attended all three lessons.
After registering online, I started fighting for Data to have access to the education other children of his age received. You have no idea how many hurdles a parent of a child with disabilities has to overcome before taking the child to school on September 1. If a parent does not plan ahead, apply to the school and the Ministry of Education for creating the position of a special education teacher in the school and the resources to equip the classroom, their child may be left without a proper inclusive education. My fight is against the education system that unfortunately we have today in Georgia. It has taken a lot of my energy and nerves. Sadly, the parent fighting for her child’s rights is called a schemer and a plotter. For some reason, the majority thinks that you must succumb to their rules, but I “dared” sue the head of the school and thus violated their rules. One day when I took the child to school and was leaving the building, parents, among them, sadly, some of the parents of Data’s classmates attacked me, one of them even pushed me. I can still remember them yelling “We supported you and this is how you repay, now you wait!”, “Take you sick son from our school”. They expected me to be exultant that my son was studying alongside their children and were mad at me for being ungrateful and for speaking up.
My son has the right to learn and I don’t need anyone’s permission for that!
In the beginning, before my child had an individual special education teacher, I sat at the lessons beside him for one week. You have no idea how stressful it is for a parent. I always insist that a parent must not sit beside the child in class because you know the problem your child has, you have put it in a box and you don’t want to think about it, you just want to keep focused on the future. During that one week, this box was opened and the life reminded once again what problem my child has.
All this has given me a huge experience, and now I am helping other parents to give their children a proper education. I help them to fight to get an individual special education teacher for their children, and tell them what procedures they must go through before the child actually goes to school. The parents who fight so pave a way for future generations, to spare them of the hardships we have been through and will have to face again in the future.
Data is now in the second year of the same school. He has an amazing teacher and two special education teachers who replace each other during three lessons. We cooperate very well, sometimes the child supervisor goes to them and they work together if Data has difficulties in behavior. Data feels himself like an individual when he sits with his classmates at the lesson and goes together with them to trips, museums, theatres, and other places.”