Khatia Razmadze, 30, Bolnisi
,,Nikoloz has completely changed our lives and has also let me find a new profession.
He was diagnosed with congenital glaucoma when he was 4 months old. I was young and inexperienced back then so I trusted Georgian healthcare. He was 6 months old when he had his first surgery. He had the second one soon after and he continued to be treated for the next year and a half. When he was 4 years old, I noticed white spots on his left eye and realized that despite what the doctors told us, his condition was getting worse. The biggest problem was communication between the doctor and the patient’s parents, which, when done properly, is very important, helping the parents become strong and transfer this newfound strength to their children. I constantly asked questions that nobody could answer. I as a parent was interested in what chances we had and what kind of expectations should we have. Now I think that time was just wasted. Perhaps Nikoloz wouldn’t be completely healed but at least we could avoid the results we ultimately got: After long treatments in Turkey, Nikoloz, at the age of 4, had enucleation surgery (author’s note: he had his eye removed). Due to the treatment in Turkey, we were able to save his right eye. Nikoloz is 8 years old now. He has poor vision. In the right eye, his vision is – 12 and he can only perceive things in a one-meter radius.
He got so many surgical interventions from a very young age that he got already used to his condition. He is now 8 years old and he has to be careful all the time. For example – even though he really wants to – sports activities are forbidden for him. I warned children around him to be careful while playing with the ball with Nikoloz. Once he complained that the other kids weren’t throwing the ball as hard to him as others while playing ball. The doctors also banned smartphones and TV. In the 21st century, it’s difficult to forbid the child all this stuff. We’ve also changed our family lifestyle – we rarely watch TV.
It often happens that men often leave families with children of limited abilities and mothers have to take the whole responsibility. I got lucky. My husband, Giorgi, has always been involved in caring for Nikoloz and he was always by our side during surgeries and every step of the treatment. We are making each other stronger. I trust Giorgi the most when it comes to taking care of our child. When I have to go to training in another region, our child stays with him. Nikoloz is undergoing daily medical treatment and his eye prosthesis sometimes needs cleaning. Doing these procedures is only my husband’s responsibility.
I’m a biology teacher in one of the private schools in Bolnisi. When Nikoloz came of age to go to school, I really wanted him to study in an inclusive children school. The only specialized school where the environment is adapted for blind and low vision children is in Tbilisi. Since Nikoloz is depended on us it would be stressful for him to go to a school far from us, despite everyone around me advised to take him to the specialized school. However, I chose an alternative way for him to go to an inclusive school and brought him to the school where I teach. This decision also had another reason: Nikoloz has to spend his life in this city. if he goes to study in Tbilisi, when he comes back it will be hard for him to adapt himself. He’ll feel alienated and be isolated from his peers. In this school, he’s growing up people who live nearby, everyone knows him, he has friends and there are almost no risks of him perceived as ”different” or ”weird”.
I faced some difficulties. The school which should be open for inclusive education seemed to be completely unprepared for a student with special needs. Even though teachers had the basic knowledge of inclusive education, there wasn’t even one teacher who would help the child to adapt the education system to his needs. There was no such specialist in the whole region. By the way, that’s the reason that some blind people in our region can’t get an education at all. That’s exactly where I see our education system’s flaws: they enacted the inclusiveness law and they started looking for specialist teachers only after the law was passed. This makes the situation harder in schools and hampers parents’ and children’s’ development. So, I decided to become a special individual teacher for my son and participated in the training. In the last year, I took part in the certifying course organized by Germans, where I became a mobility-oriented specialist. This specialty covers being able to teach the skills to blind and low vision children to teach them living independently and help them take care of themselves on their own. For example, to learn how to use the white blind cane, perceiving space, identifying barriers. I remember, when I used this knowledge with Nikoloz, I got results right away.
Nikoloz was walking very carefully, thinking there were barriers all around. If someone walked by, he got anxious. First I taught him how to walk in school corridors: one wall on one lesson, second wall on another. Then I gave him a task – to walk in the corridor independently. (Before that I always held his hand). He ran and happily told me that he always wanted to run in this corridors like that.
In parallel to studying space orientation, I learned the education methodology as well. In fact, I was trying to research everything by myself, by collecting information from different sources on how to simplify the study process for my son. Nikoloz saw the lined notebook pages as blank. I drew contrasting lines with a marker so he could write in the lines. Then I found out that there is a large magnifier and it simplified the reading process. The school books are written in very unfriendly fonts. They’re hard to read not only for a child but sometimes for adults too.
I practically have to always be by Nikoloz’s side. Besides working with him directly, I’m also sharing my experiences with other school teachers. All of Nikoloz’s teachers now have the basic skills of specialty-teaching. We do it ourselves in our community. We don’t have any support from the government. I gave up my personal interests to help Nikoloz better. It is very important for me, for my family and for Nikoloz’s development to have knowledgeable institutions and their support.
I’m very excited to share my knowledge and experience that I have collected through my course of mobility-orientation and working with Nikoloz to help other people with special needs in our region. Nowadays there are 15 people with special needs around here, who are isolated from the outside world. I have an idea to create a center for blind people in Bolnisi, where they’ll get help on-site and will also help them integrate into society.”
Author: Maiko Chitaia
Photo: Nino Baidauri
Translation: Mariam Kajrishvili