Oct 2020 Pledge Times (Ukraine)

Seven years ago, Daria Gerasimchuk became the executive director of the Vidchuy public organization, which deals with the social adaptation of people with hearing impairments, and also consults families with children with hearing prostheses. Now the fund is implementing a very important new project – “Cabinet on Wheels”. Its goal is to examine as many people as possible (ages 7 to 55) who may have hearing problems. The car, equipped with special equipment, will visit more than 30 cities of Ukraine. Diagnostics will be carried out to people who wish it. Within ten minutes, a person can receive a screening result to really see if he needs the help of a specialist. Over 600 children and adults have already been examined, and the work continues. This is her story: 

Daria’s pregnancy and childbirth were difficult. But, according to the doctors, the daughter was born healthy. I was worried that the child did not walk, did not make any sounds at all. But the paediatrician reassured: it happens. In a year and a half, Polinka does not say a word. And again the doctor told me to calm down, wait – they say, by the age of three, he will start talking in sentences. Nevertheless, he sent the baby to a neurologist. This doctor suspected … developmental delay.

– Didn’t you believe it?

– I didn’t want to believe. I began to study with her even more. The doctor prescribed vitamins, a course of dolphinotherapy. We went through ten sessions. However, there was no result, and it could not be … I don’t know how long I would have been in the dark. And then there was such a case: in the room on the windowsill lay a balloon. It suddenly burst, and everyone shuddered in fright, but Polinka did not even turn her head. Then I immediately inflated another balloon, pierced it. And again the child did not react to the loud sound. That’s when I urgently enrolled my daughter in a private clinic to have her hearing checked. The diagnosis came as a shock to me: the child was “deaf and dumb”. In fact, this is an erroneous diagnosis: my daughter had sensorineural deafness, that is, the problem was that she did not hear and only therefore could not repeat human speech, copy sounds. And the dumb baby was not. In a private clinic they told me a phrase that even now brings tears to my eyes: “The girl will never be able to speak. Humble yourself. ” I sobbed at night, locked myself in the room and shouted … Thoughts revolved around the fact that Polinka would never say the word “mother”, that she would not be able to dance in a disco, that she would never hear my voice at all.

– It was ten years ago? But at that time, operations to implant cochlear implants were actively carried out … True, there were not enough free implants for everyone. But the technique was widely known!

– It amazes me that in a specialised clinic that sold hearing aids, there was no specialist familiar with this surgical method. I am far from thinking that doctors deliberately did not give patients information. The queue for implantation at the Institute of Otolaryngology turned out to be huge – more than 700 children needed implantation. And the state bought about twenty annually. This means that the rest of the children were either left without help, or their parents had to collect money (at that time more than 300 thousand hryvnias). After all, my child’s turn would have reached in 30-40 years … And then my parents decided that for the sake of their granddaughter they would sell the Kiev apartment, and they themselves would live in the country. And so they did. The biological father of the child, with whom we had not been scheduled, considered that he did not need unnecessary trouble, and left us, saying that he could still give birth to a healthy one. And we, together with my parents, who simply adore Polinka, had to cope with all the problems ourselves. The money from the sale of the apartment and the funds collected by caring people were enough to install an implant in only one ear for my daughter in a year and ten months. The second Polinka was operated on six months ago at the expense of the state. She fully hears, studies in the sixth grade of a regular school, is going to become a clothing designer – she goes to courses, sews her first collection. She has a fine artistic taste. But the main thing for me is for my daughter to feel happy. I say this to other parents who face similar problems.

– Otolaryngologists have been advocating screening for several years. But, unfortunately, nothing happens … Specialists of the Institute of Otolaryngology said that the study was not difficult to conduct, and the results could be assessed remotely.

– I heard about it too. But so far there is no such thing. It is sad if you see a child whose parents have lost too much time, and through no fault of their own: someone could not be diagnosed for a long time, and someone had been waiting for their turn for an operation for more than one year. Although the cochlear implantation program is now in place, the state pays for the implants, and the number of neglected cases has decreased.

– After the operation, parents often hope that the child will immediately begin to hear and speak …

– These expectations are not met. We must be prepared for the fact that it will take more than one year to teach a child to understand the world around him, to master techniques together with specialists. After the operation, Polinka did not immediately react to sounds. It was a full month before she turned around when I tapped a wooden spoon on a metal cup. But before that I knocked behind her with an iron spoon on a glass cup, shook the rattles, but there was no reaction. Some children literally immediately after implantation begin to turn their heads towards the sound source, others need time. And in the first, and in the second case, you should not worry – this is the norm.

– How does a child learn to pronounce the first sounds? 

– You need to constantly talk to him, commenting on your actions. For example, in the bathroom we say: “Here is a toothbrush, it is in a glass, we squeeze paste on it, brush our teeth!” It is good to accompany your words with short interjections. And do everything very patiently, do not rush things. Believe me, there will definitely be a result. If a child holds out a pen and points to a glass of water, you need to persuade him to say the word “Give!” Let him not immediately pronounce it, let it be at least one letter from this word. But the baby will try – and this is already worthy of praise, mother’s approving reaction.

– Is that how you studied with Polinka?

– At first, I pinned too high hopes on the deaf teachers. It seemed to me that the more the child is engaged, the faster we will achieve something. And then I realised: it’s the opposite. You cannot force a three-year-old child to sit for 40 minutes in class, where a strict teacher rigidly demands that the child do something. Polinka categorically refused “lessons”: on the way to classes, if she saw a puddle, she simply fell into it so that there was a reason not to go. And the nanny or I took her anyway. The teacher, who was considered one of the best in Kiev, told me: “You ‘loved’ the child! It is necessary to have a strap at hand and the child knows that he will be punished for disobedience. ” My daughter was so afraid of classes that one day she said in a barely understandable language that she had “broken her leg.” Nobody explained to me what it means to “love” a child. When I realised that the teacher and I fundamentally disagree on teaching children, I began to study with my daughter myself. And our success has become much better. Once, when we had guests at home, my daughter uttered the word “mother” in front of everyone. I cried with happiness …

– Working in the “See” foundation, do you use your experience to teach other children?

– Yes. In addition, we managed to gather wonderful teachers. All classes are free. And with those families that have just learned about the problems of the child, they are ready to share information. At one time it was her that I missed. When I heard my daughter’s diagnosis, I was in terrible despair for two weeks. Godmother Polinkina saved me. She said: stop suffering, you need to get out of depression and act. It was in those days that she heard about a woman, the mother of two twin boys, who was diagnosed with sensorineural deafness the same as Polina’s. After the boys got cochlear implants, they were able to learn to speak and went to regular school. Kuma found the coordinates of the boys’ mother, introduced us. It was the speech therapist Olga Gribenko. At the first meeting, she gave me a lot of valuable advice, saying: “If you want your child to have the same, act!” Now Olga works at our foundation, helping kids to hear adults, their peers and start talking.

PolinaPolinka likes to discover everything new – to try to play the guitar, dance, take pictures, draw, create clothing collections

Daria admits: “As soon as you begin to understand what the word ‘happiness’ means for you and your child, everything falls into place. You learn to appreciate every happy minute, day, year. And yet happiness for us is that when my daughter was two and a half years old, I met a man who became a real dad for her and my husband – loving, understanding everything. We often hear that mothers of children with disabilities put an end to their personal lives if the father leaves the family. I was convinced: it should not be so. A woman shouldn’t even allow such a thought. Then happiness itself will find it.

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