Maia Shishniashvili, 45, Tbilisi
“I discovered it later in my life – if not my son, I would not have done many things that I did and my life would take a completely different turn…
Levancho is my first and, so far, the only child. He will turn 12 soon. He has intellectual development disorder.
His problems did not show themselves immediately upon his birth. At least, I have never noticed them. Nor has anyone warned me about them. However, when he was only a month old, he was hospitalized. A few years later I learned that the syndrome that Levancho had, was usually characterized with certain problems in the very first month after birth. We repeatedly found ourselves in hospital without knowing the exact reason. We did not have the diagnosis and thought we were finally safe. Six months passed since then. The child showed no signs of acute health problems, so we did not go to the doctor again.
Levancho was one year old when I was informed that I had won in the Muskie Graduate Fellowship Program and received scholarship. I gladly agreed to leave for the USA. At that time, the Ministry of Healthcare was launching many interesting programs and I could see that even though the government offered people various significant healthcare services free of charge, people did not or could not use them. I realized that it was important to improve public awareness and education so I decided to make it my job to support public healthcare and education.
So I went to study in the USA. I left Levancho with my parents and his father because the program did not allow taking your family with you during the first term for various reasons. You could take your family with you only after the first term and only if you had the highest grade (A) in all the courses.
Once I was in the University, I made sure that I was able to take my family with me and let them know in Tbilisi. There had been a few hints here and there but only then I was told outright that Levan was not feeling well. I had left Levan at the age of one and a half years, slowly toddling along the walls. The problem was that after half a year, he walked the same way, there was no improvement and he could not walk independently. He did not say any words, and had virtually stopped to learn anything new. It was obvious that his development was hampered.
When I talked with doctors, they would calm me down with something like “he will catch up with his age” and other words of encouragement. These were those typical mistakes so many doctors make when dealing with parents. After my departure, he started to have epileptic seizures as well. It took my family, Levancho’s father and his family the entire second term to find out what was happening to the child. I could not do anything from afar other than wait for the end of week to call home. Every time, I would ask “has he learned anything new?!” It was followed with hesitation, confusion and finally the answer: “no, nothing much”. It was an endless and, at the same time, pointless waiting for some good news, even if trivial one. I called home for weeks and each time I got the answer: “no, nothing”…
Even though Levancho’s father was supported and helped by my and his parents, he called me and told me to make up my mind quickly because he could not handle the situation alone any longer. He told me to arrive home and take care of the child. For one whole day I was thinking of really giving up everything and going back to my kid, but very soon I realized that it was not a good perspective – studying endlessly without any work… considering that my child needed a lot of support. The following day I called him to say I was not going back, on the contrary, we needed to bring the child to the USA, as we had planned before. His father told me he could not come to the USA because of his family. But I had strongly decided to take the child with me and try various medical examinations and therapies here. I started preparations, having realized that I had to plan so that I could look after the child alone and also take care of my studies. Back then I only had scholarship to live on and could not work for additional income. I knew it was going to be difficult but I could not even hire a nanny. I was identified as living below poverty line which was good to some extent, because I received certain services free of charge. I immediately looked up all the services I could use when I had my kid with me.
In addition to taking my child to medical examinations and diagnostics, I had to manage to study because I had one more year left at the university. Levancho arrived in August and I had already prepared the classes for the next term, I had taken summer classes along with the mandatory summer work. I took online classes so that I could stay with the child. I continued to learn and got early intervention help for Levancho. A special child and occupational therapist came to our home and taught him through games. I acted as an interpreter. It was good for me as well because I was involved in the process and was learning what had to be done. When I was back home I already had experience of working with him. We also started medical examinations but it was a challenge as we had to travel to another city and it had to be organized. Unfortunately, Georgian doctors had made many mistakes that I found out only after the medical examinations in the USA. That is why, Levancho’s doctor subtly yet strongly advised me to remain in the USA. However, in addition to all these problems, Levancho had serious sleep disorders. After many sleepless nights, I realized that I needed to go back to Georgia because I did not have any physical strength left to keep fighting alone; and if I fight I’d better do it in my home country.
So we returned to Georgia…
Even as I was studying in the USA, I kept repeating to myself that I had to do something to improve services for people with disabilities. However, it took me long to actually know what I needed to do. One day, when I was trying to realize what was troubling me all the time, I discovered that I was afraid of the future because there was no stable and safe future for my child. Today, I am taking care of him but what happens when I cannot support him any longer? I would watch Leo thinking that I had to fight for his better future.
I decided to set up a support service for people with disabilities that would be so good that I would gladly entrust my child to it. I found the best option was family-type home that would serve a small group of people. For this purpose, a non-governmental organization “Hand in Hand” was established in 2010. We opened the first family-type home in Gurjaani, my parents’ house where my brother and I were born and raised. We offered family housing to the people with disabilities who lived in institutions. We gave advantage to people with intellectual disabilities as one of the most neglected and stigmatized group.
We set up and operated this service for the government to see a good example of improving the condition of people with disabilities. So far, we have managed to reintegrate 22 people to the society, shaping and improving their new life step-by-step. We have recently moved to the new stage of fight for change – we are working to actively advocate this model. This model needs to be developed, spread and turned into accepted practice – nobody should be thinking that people with disabilities do not belong to the society, and they need to live somewhere else. Their rights to living within the society, receiving education, being employed just as any other person without disabilities must be acknowledged. What is more, I want the government, business and non-governmental sector and the whole society to recognize their responsibility to help people with disabilities to live within their society as equals and with dignity, rather then offer them “charity” in secluded shelter homes.
I am actually creating future for my son – the environment where he can live his life to its fullest and with dignity. I hope I can make it happen. There are more of us, who believe in this idea and we stand together to fight for it…”