‘We’re caught in mid-air’: Raising a child with autism in Georgia

‘When people see my son, sometimes they’re still surprised: ‘Oh, but he’s normal!’, they say. I want this kind of reaction to go. We need acceptance’, says Keti Nebieridze. (Tamuna Chkareuli/OC Media)

The following is a version of a partner post by Tamuna Chkareuli that first appeared on the website OC Media.

Keti Nebieridze is a single mother in Georgia. Her son Sandro, who turns 16 this year, was born at a time when there were no basic services for children with autism. Though the government now provides 20 hours of therapy a month, Nebieridze still struggles with the demands of being a single parent.

“My family sold everything they had to buy all the medicine [for Sandro].”

Nebieridze is a hotline operator, working day and night shifts in rotation, with every fifth day free. She does not use her work holidays or sick days.

“I can’t allow myself to do it. I’m constantly thinking about Sandro’s needs,” she says. “No one will give you sick leave just for being a mother, will they?”

‘I thought a lot about what to have [tattooed] and realised that the only thing I would never be bored of is my son’s name’, says Keti Nebieridze. (Tamuna Chkareuli/OC Media)

Once he turns 16, Sandro will no longer receive free therapy.

“It’s going to hit him hard,” Nebieridze says. “I see how his skills have improved during the last few years and he really has started to communicate with people. We’re caught in mid-air.”

Sopo Kereselidze is the founder of the first autism support centre. The programmes that are provided by municipalities today are based on the research Sopo and her team have collected since 2010. (Tamuna Chkareuli/OC Media)

‘If you don’t push, they will forget about our existence’

Ever since Mari Korkotadze’s son, Data, was diagnosed with autism, her life has been a constant battle.

In 2015, she founded Families against Discrimination, the only watchdog organisation run by parents of children with autism in Georgia. 

Mari Korkotadze with her son Data. When he started school four years ago, Korkotadze had to pressure the school to appoint an individual special education teacher. (Tamuna Chkareuli/OC Media)

One of the biggest battles parents of children with autism have had to fight was for therapy vouchers.

Currently, autism support programmes are provided by each municipality separately. The first such programme was unveiled in 2015 by Tbilisi City Hall; similar programmes in Batumi, Zugdidi, and Kutaisi, and partially in Telavi, followed.

According to the programme in Tbilisi, children between the ages of two and fifteen are entitled to 20 hours a month of Applied Behaviour Analysis. Parents receive a monthly voucher worth 400 lari ($148) to spend on the service.

But those registered in a municipality that does not offer applied behaviour analysis do not receive vouchers, meaning parents must take their child to a neighbouring region and pay for both the therapy and any transportation costs that arise.

One year later, after a series of rallies, hunger strikes, and meetings with the head of the municipal department of Healthcare and Social Services, Gela Chiviashvili, the parents managed to change the requirements.

It was agreed that children who were not born and registered in Tbilisi before 2015 would have to wait one year to receive the benefits of the programme. However, the municipality later changed the period to three years without notifying the parents.

“At that point, some children had weeks left before the start of their therapy. And now they have to wait two more years and lose more precious time.”

Korkotadze has been pressuring the city hall to increase the budget for the autism programme.

“If you don’t push every year, they will forget about our existence,” she says.

Loopholes in the education system

Korkotadze says, that in kindergartens, the administrators prefer to redirect children instead of working with them.

“These children are entitled to a personal assistant, it’s the law. Sometimes it’s the directors not knowing about the laws; but more often, they’re probing parents, and if they see the parents are not aware of their child’s rights, directors do everything to expel these children,” Korkotadze says.

Personal assistants help children with special needs in the learning process, acting as mediators between the student and the academic environment. However, the salaries for personal assistants are not fixed, and it is schools that decide how to spend this money.

Apart from personal assistants, there are special education teachers, whose function is to adapt the learning programme for the student. Tamar Gagoshidze, a neuropsychologist and head of Tbilisi State University’s Faculty of Psychology and Educational Sciences, says that while not every child requires a personal assistant, every special needs student needs a special education teacher.

Special education teachers, however, are more expensive.

An occupation therapy room. Both Tamar Gagoshidze and Sopo Kereselidze agree that the existing programme does not meet the needs of 12 to 15-year-olds. (Tamuna Chkareuli/OC Media)

Lack of qualifications

According to Gagoshidze, the biggest issue with the programme is diversity.

“Not every child needs these 20 hours, and not every child needs so many hours of [Applied Behaviour Analysis] therapy. There’s a room for diversifying these services.”

The service should include psychological support for parents too, Gagoshidze says.

Natia Londaridze is an occupational therapist. ‘This is the most beloved room in our centre’, she says. (Tamuna Chkareuli/OC Media)

“Even one hour a week as a part of a municipality programme would be enough to aid the stress, anxiety, depression, and above all, PTSD that parents face. The emotional state of a parent has a direct impact on the child — this is especially hard on children with disabilities, who have strong bonds with their parents.”

Both of these issues are connected to the lack of qualified specialists,” Gagoshidze says, which is a direct result of the absence of relevant academic programmes.

“When the programme was started, these children were little, and there was a high demand for preschool therapies. But teenagers and young adults have different needs, and there are no people to meet these demands. For teenagers that made progress, it would be harmful to drop therapy now.”

As statistics on the number of people with autism rise across the world, Georgia being no exception, Nebieridze stresses that new problems are around the corner: “What I need is support. I need the government to understand that today, my son is 15, and tomorrow it will be someone else’s [child]. They have to find a solution for these children.”

Originally published in Global Voices.