Latifa and Adilet: a chance to be in school

Early intervention in Kyrgyzstan opens doors for children with disabilities

By Sven G. Simonsen
Latifa (4) (left) and her big sister Fatima (6) together in their home yard.
UNICEF Kyrgyzstan/2017/Sven G. Simonsen

15 October 2018

Nazira’s experience raising a child with cerebral palsy has made her a strong advocate for early intervention to help identify developmental delays - so children can access the support they need at a young age.

“Mothers have so much hope, they don’t want to believe that anything is wrong with their child, so they don’t seek help," says Nazira. 

It is clear to Nazira that life could have been different for her son Adilet, who is now 9 years old, if she had been better informed, and doctors had responded accordingly, when the boy was still a baby.

Nazira, a widow, lives with Adilet and her parents-in-law in a small mountain village in Kyrgyzstan’s Issyk-Kul province.

Adilet was born prematurely and with cerebral palsy. Nazira – who has three other children – struggled to understand the boy’s condition.

A few months after Adilet was born, Nazira was worried, because he could not sit up, or crawl.

"Until he was two years old I continued to believe that he would learn to walk", she says.

A unique opportunity

Since then, Nazira has learned a lot about children with disabilities. She is well aware that the first three years of a child’s life are critically important, a message that UNICEF shares with families and communities.

“In the first 1,000 days of a child’s life, the brain cells can make up to 1,000 new connections every second. This is a unique opportunity for learning and adaptation”, says UNICEF Representative in Kyrgyzstan Yukie Mokuo.  “Early identification of developmental delays is essential to make the most of every child’s potential.”

But Nazira knows well, that too often, parents miss this critical time of development.

 

Supporting parents of children with disabilities

According to Nazira there are 20 children living with a disability in her village and few of the parents are aware of the precise condition of their child. This in turn, leads them to struggle with ensuring proper care and support for their children, just as Nazira did before.

Until recently Nazira received support for Adilet’s education by teachers from a local charity organization -  Shoola-Kol. But classes are only for pre-school aged children, and Adilet is now too old.

Nazira herself is eager to support other families. Although her days are filled with being Adilet's mother and tending the family's cattle, she offers her insights on the importance of intervening early to volunteers and medical staff working in rehabilitation.

Adilet smiling next to his mother Nazira and grandmother Bubugul.
UNICEF Kyrgyzstan/2017/Sven G. Simonsen
Adilet smiling next to his mother Nazira and grandmother Bubugul.

A family’s experience with early intervention


In another village, not far from Adilet and Nazira, live Begaiym, her husband Myktybek and their two daughters, six year old Fatima and four year old Latifa.

Latifa was born prematurely, in the 31st week, and during the first months of her life, doctors discovered several conditions, including hematoma, a swelling in the brain.

Begaiym's first meetings with doctors after Latifa’s birth did not shed light on the situation. At the local hospital, she explains, “They only spoke about vitamins'. After five months, Begaiym took her daughter to Bishkek, where Latifa received an accurate diagnosis and began treatment.

Still, as Latifa got older, it became clear that she was experiencing developmental delays.

'I was starting to lose faith', says Begaiym. 'in my mind, I was already preparing for a future where my child would not go to school.'

At age of three, Latifa still couldn’t speak. That was when the family reached out to the Shoola-Kol charity organization. They offered advice and helped Latifa learn her first words. Today, the four-year-old speaks well.

She has made friends too.

“If before she didn’t play much with other kids, a week at a children's camp last summer changed that. The first few days were difficult, but gradually it got better. After we got home, she started socializing more here, too,” says mother Begaiym.

Thanks to the progress that Latifa has made and in spite of setbacks along the way Begaiym now expects her daughter to start school when she reaches the age. Latifa, too, is determined to join her peers in the classroom:

I will go to school, and I will get the best grades!

Begayim holds her daughter Latifa next to husband Myktybek as they smile for the camera.
UNICEF Kyrgyzstan/2017/Sven G. Simonsen
Due to early intervention, Latifa’s parents Begaiym and Myktybek now expect that their daughter will go to school when she reaches the age.

UNICEF support

In Kyrgyzstan, UNICEF has helped create and promote the country’s first standards for child development. Approved in 2016, the standards help parents and professionals keep track of children’s physical, emotional, social and cognitive development, and identify any delays at an early stage.

In August 2018, UNICEF, jointly with the mayor’s office of Bishkek and “Hand in Hand” NGO, piloted a model of early identification for children with disabilities and developmental delays. The model focuses on enabling teachers, health workers, social protection specialists and parents’ associations to act together to make sure that developmental delays in children are identified early and families receive adequate support.