The upcoming scheduled blood draw was quite frightening for her. Sofia, a young second grader. Moments before the needle approached her clenched hand, Sophia quickly devised her own fear-calming ritual: she began to repeat aloud the rare name of a girl from her school class. “Daira, Daira, Daira!”echoed for a few seconds in the microbiology lab, bombarding her mother, Marina, with questions.

Is Daira your friend? her mother Sophia then asked, receiving a disarming answer: “Yes! She has fantastic shoes and is special!”

For eight-year-old Sophia, Daira was special because she “did not talk like other children” and communicated using picture cards prepared for her by her mother and teacher.. “The cards say what she has to say, but I know in advance what she wants to say every time,” Sophia told her mother, who explains to “K” how strongly the two friends bond. “She was very glad that she was able to understand Daira before she took out the tab. Sophia takes care of Daira. She cares more than anyone else.”

Clara, his mother James, who attends the same class as the two girls, has a similar experience. “I didn’t understand their relationship from the beginning. James often told me stories about her, showed me how much fun he had with her. Because Daira is so accepting of everyone, James can be himself with her.“, speaks.

Living with a rare syndrome

When she was two years old, Daira was diagnosed with a rare syndrome. Phelan McDermid, or otherwise 22q13a genetic disease that causes severe developmental disorders. In Greece there are still 11 children with this diagnosis, and in total there are about 1800 children in the world.explains Christine, Daira’s mother, in “K”. “It’s an underdiagnosed syndrome.”

“When you have a child with a disability, you worry about what will happen to your child when you are gone.”

Christina looks at her daughter with adoration every time she enters the kitchen and turns the refrigerator on and off because she is bored. She asks for a snack, which she eventually refuses, with Christina teasing or kissing her as if she had time to see her. “I think all love songs are written by mothers for their children.”he says and mutters alone.

Despite love, or maybe because of it, Christina seems confident: “If I had discovered the syndrome during pregnancy, I would have had an abortion,” she says without hesitation. “When you have a child with a disability, you are interested in what will happen to your child when you are gone. Daira is my princess – and she is a princess! – she lives a gifted life, he rejoices in love, joy, gratitude. This, I don’t know if I can provide it for her when I’m gone“.

The first thing that crossed Christina’s mind when she was told the results of a molecular karyotype test confirming her disability – whether Daira could ever fall in love and what will happen to her when she herself dies – for the latter, Christina plans what will happen next. However, she was sure of some other things. As if he would never send her to a special school.

Special or regular school?

Daira’s profile justified attending a special school, but Christina, herself a special educator, was of the opposite opinion. “A special school has the characteristics of an institution. It’s actually a parking lot. There is no individualization here, they work with high functioning children, and children with lower functions or children who have behavior problems only exacerbate their problems. Because they get very limited incentives without actually doing anything. They are bored. How do they not have rashes?” he wonders aloud. Her point of view also finds many supporters among the local disabled community.

“The matter is complicated,” he says to “K”. Stavros Fragos, Director of the Center for Assessment, Counseling and Support (KEDASY) Komotini, one of the most accessible cities in Greece for people with disabilities. KEDASAs, decentralized services of the Ministry of Education, are responsible for issuing advisory opinions regarding the attendance of children with disabilities in special or standard schools. “In theory, there should be a reform and special schools should be closed.. We don’t need to look at Sweden. Southern European countries such as Portugal have been doing this for 40 years,” he explains, adding that it would be interesting to see where special schools are located in Greece. “It’s all outside the city. It means something”.

However, St. Francos also points to the other side, which links the devaluation of special schools to the stigmatization that some parents see as attending these schools. “But to tell a neighbor that my child does not go to a specialist, the child will not be disposed,” she adds. “We evaluate according to the interests of the child. We have good special schools, there are less good ones, and even bad ones. In formal education, we have brilliant examples of children doing well and their classmates benefiting. But often, if the child does not go to a special school, precious time is wasted,” he says.

KEDASY’s opinions are non-binding and are not shared with schools. Thus, parents have the opportunity to choose the education for their child. However, if, in the presence of an opinion about attending a special school, a standard one is chosen, parents must cover the costs of parallel maintenance at their own expense. “A parent who is financially well does whatever they want. Others cut food so that the child can dine separately,” says Stavros Fragos.

Cristina covers most of Daira’s fee for deferring her teacher’s work from disability allowance in order to send her to a regular school. She first contacted a nearby public school and spoke to its principal. “And of course we’re taking Daira,” he told her. Although this school was quite inclusive, for various reasons, Daira’s parents chose a private school that emphasizes the emotional development of children.

An experiment that worked

Daira’s experience in kindergarten gave her family their first glimpse of the school exploits that might follow. Not only for Daira, but also for those around her. The parents of her first classmates, at Christina’s request, each wrote about their childhood experiences with a girl with Phelan-McDermid Syndrome.

“Christ not only became acquainted with diversity (…) He developed his empathy to a remarkable level for his age., was concerned and wondered about Daira’s diversitywhich gave us as parents an incredible opportunity to discuss fundamental issues with him,” writes one parent in a long note.

However, the elementary school Christina chose initially had some reservations. In order to get her, they agreed to have Daira undergo an examination that would determine her stay there. “Dairaki will make us whiter,” her father had said soothingly at the time. Very soon the idea of ​​evaluation proved redundant. Daira has grown a lot in those first two years of elementary school, and her classmates have grown as well because of her interactions.

“At first, Daira was alone in the garden, until there was a very big change after walking through the forest,” says Anastasia, class teacher. “The kids pulled her, fell together, laughed, it was like a real connection. These things work, work, and suddenly something happens, and it shows. It was a work in progress. And finally, Daira began to ask the children by name, take the initiative and stay in the company for a while, live in the moment, be present,” she says.

Now Daira prefers her friends to adults “She is completely different when she is instructed by children,” says Anastasia. But kids also learn new skills. “I saw how she went to pinch a classmate – because that is how she expresses her excitement – and he, instead of taking her away like the other, or pushing her hand away, grabs her and caresses or massages her. . Daira calms down and then does the same to others,” adds Katerina, teacher of parallel supportcapturing some of the tender moments of this inclusive stage of Second Primary through a mobile phone.

“Dira made me a better teacher,” her mother says. On the day she was informed of the syndrome, Christina contacted her. Katie Phelan in the US, the researcher who discovered and named the syndrome, who told her that “the best doctors are the parents of children suffering from the same syndrome.” Due to her insistence on providing all the knowledge and energy to ensure that Daira had the stimuli that most children have, a good doctor proved to be the standard structure she was included in.

Daira’s future still worries Christina, but her present is full of daily triumphs.