More centres needed to tap potential of Down’s syndrome children

Aisha is an active little girl who easily captures the interest of everyone she meets with her warm smile.

The five-year-old Emirati suffers from Down’s syndrome, yet her mother, Umm Aisha, said she has never been treated differently by the people who come across her.

“People are always affectionate towards her, and it cheers me up to see this. But I still worry because it is a struggle to find adequate therapy here that will help her develop her potential to the fullest,” Umm Aisha, a human resources manager in her forties, told Gulf News.

“My daughter may have a chromosomal disorder, but she is actually more self-sufficient than my older four children were at her age. So I would love to have access to advanced facilities that could tap into her special abilities,” she added.

Gulf News found that Umm Aisha’s concerns are echoed by a number of other Emirati women in the capital whose children are also affected by Down’s syndrome. While they commended the widespread acceptance of their children in the UAE, they added that there is still a need for many more centres that can help them harness their abilities

Higher prevalence

According to the World Health Organisation, the estimated incidence of Down’s syndrome is about one in 1,000 live births worldwide. Among Emiratis, however, the incidence is higher, with about one in every 320 Emirati babies in Dubai affected.

Speech, occupational and physical therapy is currently provided for special needs children in the emirate of Abu Dhabi by a handful of centres. Among Emiratis, the leading institution is the government-run Zayed Higher Organisation for Humanitarian Care and Special Needs, which not only provides therapy but links individuals with career opportunities so that they can become productive members of society.

But parents said there is still a need for more staff at the organisation as well as more centres that provide a wider variety of therapies and training programmes for their children.

Zaafaranah Khamis, 62, said there had been much progress in the UAE since 1992 when her 25-year-old daughter was born with Down’s syndrome.

“There was a fear then, and parents might just leave the upbringing of a child with special needs to therapists. But there is an understanding now that the abilities these children possess are different and particularly amazing,” Khamis said.

She added that Mariam is gifted at handicrafts, passionate about reading and fond of mathematics and reading. She is also the life of every social gathering she attends, and she wants to play sports regularly.

“My daughter is a perfectly self-sufficient adult, and what I would really want for her is to continue being able to do the things she loves. She likes a range of sports, and is always very enthusiastic about the Olympics, so I would love to see more sports-related opportunities for her,” she said.

“In turn, I would urge all parents who have children with special needs to be personally involved in their therapy and upbringing rather than leaving it to therapists or domestic staff,” she added.

Umm Ahmad, a 40-year-old Emirati homemaker, has two sons affected by Down’s syndrome, one aged three years and the other five.

“I enrolled them at the Zayed Higher Organisation very early on, where they receive special needs education and physical therapy. We have only ever used their services, but would always be glad to have access to even more facilities,” she said

source : gulfnews