Life With Autism in Ukraine

Tania needs help because she doesn’t know how to teach or engage her son Radomir. He needs to be taught elementary things that normal children know by themselves. However at the same time he is a good manipulator, he can recognize people’s weaknesses after meeting them just twice.

She was 28-years-old when he was born. He was a non-problematic child who ate everything, had a normal temperature and was born with nails like any other child. Everything changed when he was eight months old. He got a fever out of the blue and his temperature rose quickly. At the same time he stopped eating everything except for milk products and porridge.

He was two years old when he started going to preschool and his mother was told that he would hit his head against the wall and the tiles on the floor. After a visit to the psychologist and specialists told his family that he may be autistic.

However they were surprised that there were no usual symptoms at or after childhood. The only possible cause was asphyxia, since a day and a half went by between his mother’s water breaking and her giving birth.

He is very different from other autistic kids. He makes eye contact, although it took a lot of practice and he has many interests. There are no special places for children exactly like him. It’s hard to know where the thin line between his autism and the behaviors of a normal child. Some professionals say that you can’t punish autistic kids but then how do you teach them?

Radomir made progress soon after visiting the psychologist. He acted no different from normal children except for his interests that are only logical. He prefers numbers, words and geometry instead of action figures and other toys. Unless a game is educational, he isn’t interested in it.

Although physically he’s completely healthy and has perfect hearing, he only eats cooked buckwheat. He has gone through many tests and they all yielded different results. They met with a woman who had studied autism and she said that what he suffered from wasn’t actual autism but merely an aspect of autism.

Like a normal child, if you tell him that his mom is mad at him, he will hide. He needs to be taken on walks every two hours because of his amounts of energy. When he’s on walks, he is always running, trying to cover as much ground as possible.

At home however, he can entertain himself for hours with puzzles and logical games. If he can’t solve a puzzle, he will get an adult and get their help to figure out how to solve it. He finds letter everywhere. When he was 6 months old he started pointing at numbers and crying until they were identified.

He is picky about the people he communicates with. He prefers older kids, girls in particular. He doesn’t like men or kids his age except for a select number of boys who are older than him, are interesting and active. When he’s around children he likes, he does what he can to get the older kids to pay attention and smile at him.

Fortunately all the children who needed help got free support and medication, but they were all treated with the same drugs. Everything that the doctors recommended, such as tablets for stimulation, were experimental. The doctors kept saying ‘let’s try this’ and ‘let’s try that’.

He went through tests so that he could get into a preschool for kids with speech impediments. It was one of the best options for kids like him. However it is very hard to get in and he had to go through lots of tests.

As he got older Tania took him to national hospitals where they did similar tests and got very different results. Some doctors said that he didn’t listen or respond to them, while others said that he gets interested and understands everything they say. His family tried homeopathy which blamed the asphyxiation for the autism.

Children with autism supposedly don’t have regular feeling in their bodies and they have to be taught how to be held. But in his case, he got sick when he got held too much. He was given pills that were supposed to help him but they only made him cry, pee himself and have a runny nose all at once.

While he goes to school, he can only stay for half of the day which costs 3,600 UAH. This is because he is regarded as problematic and his teachers leave him alone and don’t try and get him to participate with school work. Another complaint is that he can’t eat anything no matter how much they forced him to, however the homeopath confirmed that he can barely eat anything.

Tania has paid for everything with her own money — there is no governmental help. The medication that she has tried has either made his situation worse, caused an allergic reaction or had no effect. There is only one special kindergarten for kids with disabilities in Kyiv, and it costs 20,000 UAH per month, while an average salary there is 2,500 — 3,000 UAH. Most of the medication costs around 500 UAH and it rarely works so they only try it once or twice.

His mother had to take him to a genetics institute in Kharkiv, far from Kyiv, in order to have a specialist test what he can and can’t eat. Although they got a paper from a local doctor to go to the doctor for free, the tests, including the blood test, still cost a lot. Expensive tests are offered at any chance possible.

The transportation itself is a huge hassle as autistic children won’t sit down for a second. They are full of energy and can’t be unattended. His mother once left him alone in the car for a few minutes because he was sleeping, and before she could notice he had figured out how to unlock the car and he got out. The same thing happened once at their home. He got out of the window and went out for a walk in the rain all on his own without anyone noticing. A neighbor found him and had brought him home.

In order to get basic tests, they are sent all over Kyiv. This usually involves an 8 AM registration to see the doctor for a 2 PM appointment but generally by 3 PM the doctor still hasn’t arrived. Getting to the offices and hospitals, even with an ambulance is almost impossible.

The waiting rooms are not designed for people with children. There are no changing tables in the bathrooms where it’s normal to wait for up to six hours. In addition to this, doctors are always late for at least a few hours.

The most success they’ve had was with homeopathy which was still all experimental and very expensive. A regular session with a private therapist costs $25 for a session and it is recommended to have them 3 times a week.

Life with Radomir is challenging and Tania is doing all she can to help him lead a normal life. She is struggling with not only the finances but the lack of resources and information for children with mental disabilities. She wanted to share her story in hope to raise awareness and improve the situation for other families with similar struggles in Ukraine.

https://olenakaguiukraine2014.wordpress.com/2015/10/30/life-with-autism-in-ukraine/

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