Kids with Down syndrome wish for integration in society, say experts


Saudi Gazette

JEDDAH – Neighborhoods lack specialized centers and recreation for kids with Down syndrome, according to parents who listed some of their demands at the World Down Syndrome Day event that took place here on Friday.

Doctors and patients’ families tried to show that persons with Down syndrome have unique personalities and interests in sports, arts and hobbies during an awareness campaign and carnival festival organized by Princess Al-Jawhara Center of Excellence in Research in Hereditary Diseases (PACERHD) and the Department of Genetic Medicine at the faculty of medicine at King Abdulaziz University. The event was held under the support of Jeddah Mayor Dr. Hani Abu Ras.

Children with Down syndrome like to make friends and have fun like other kids. Although they have cognitive development delays and probably birth defects, their intellectual ability varies and, they can even continue to study and work.

Under the slogan "I can", the event was an occasion for Down syndrome kids to enjoy an outing of entertainment, arts, theater, as well as a chance for people to meet with doctors and specialists to seek counseling and advice.

The chances of a child being born with Down syndrome is one in a thousand and has a higher probability in women who conceive after the age of 35. Although the disease is not uncommon, patients with Down syndrome struggle to mix with others to live as normally as possible due to a lack of awareness in society.

“It’s important for these kids to go to public places and live normally so that we can change any misconceptions society has about them,” says Ghada Rawas, founder of Special Moms, a support group to help mothers deal with family members with Down syndrome. “Organizing events and awareness campaigns also help us to introduce our kids to the public and show they have talents and abilities. We want to show we’re proud of them,” she adds.

“They have a chance to get employed according to their capabilities and skills,” says Rawas, who has a 16-year-old daughter with Down syndrome.

Mothers of Down syndrome kids said there was a need for more specialized centers, training centers, and employment opportunities.

Members of Special Moms say the support group has helped relieve tension and depression among mothers, many of who grope in the dark with misleading information.

"Mothers new to the experience are often depressed and feel alone," says Rawas. “All the knowledge out there is pessimistic and negative. Some mothers wonder if the kids are able to walk or speak. They have zero hope in their child’s future because they have little knowledge about their condition.”

She further says, “Once they join the support group, we noticed that many of them change within days, feeling motivated and uplifted. They go on to become support for others. All of us feel that raising awareness is a personal mission each mother should take. We recognize our kids have real problems but there also have solutions that allow them to live normally.”

Social media has helped mothers deal with the struggles and connect with others in the same situation.

Although there are many needs to be met, awareness has improved since a decade ago when the first Down Syndrome Day was introduced, according to Professor Jumana Al-Aama, clinical geneticist and director of PACERHD at King Abdulaziz University.

“There’s a significant difference between now and ten years ago when people had no idea what Down syndrome was,” she said. “This is a special segment of people we appreciate and would want to see them more integrated in society.”

Professor Mahmoud Shaheen, dean of the faculty of medicine at King Abdulaziz University, offered words of support when he announced the proposals containing the families' demands will be presented to the Makkah governorate to have their voices heard.