Down but not out!

World Down Syndrome Day (WDSD) which comes on March 21, is a global United Nations awareness day observed since 2012.

The date has its significance. The 21st day of the third month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. This year the theme is ‘We Decide.’ The theme is inspired by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which supports effective and meaningful participation as a core human right.

Coincidentally March 21 is also Mother’s Day in the Arab World. This year the day is exceptionally significant for Zuweina al Barwani and her daughter Ruiya bint Humaid al Habsi, a Special Olympics champion in roller skating. The 19-year-old Ruiya is ambitious and has beautiful dreams but the pandemic has been keeping her away from her activities at the Association for the Handicapped Children. It opened on Sunday (March 21) after closure due to Covid-19. Zuweina chose to go with a cake to celebrate the occasion.

According to a publication by the Directorate General Primary Healthcare, Ministry of Health, “Down syndrome is one of the commonest chromosomal abnormalities known today. Internationally, the birth prevalence is estimated to be 1 in 600 to 1 in 800. In Oman, it is 2.4 in 1,000 which leads to about 120 affected births/year. (MoH, 2011).”

Zuweina has been throughout these years looking at various opportunities that would help her child with Down syndrome come up with self-expressions.

“She learns reading and writing as well as physical education and works with a physiotherapist and speech therapist’’, explained Zuweina.

In 2018 in Abu Dhabi when Ruiya won roller skating, she cried out to her mother, “Mum I did it!”

Now she is learning ice skating every week, but what has been most interesting for her mother is the way Ruiya quickly accepted the situation of the pandemic.

“We explained to her the pandemic situation and why we should not shake hands now. She picked it up very fast and follows it with great discipline,’’, explained Zuweina.

But Ruiya’s frequent question is, “When will Corona end?”

“She loves socialising, having birthday parties and being with her friends all of which have come to a standstill for Ruiya during the pandemic. She has lots of hobbies and one of them is baking. The pictorial description at the back of the box helps her tremendously and so she enjoys making them. She likes cooking’’, her mother reflected.

Ruiya speaks two languages — Arabic and English. She has a presence on Instagram, where she likes to demonstrate DIY projects like tie and dye and making hot chocolate milk during winter nights.

HER DREAM?

To be a nursery teacher — one more reason why she cannot wait for the pandemic to come to an end is to explore and develop her skills in this area.

Her mother has been doing research. “Studies prove that they can be great at nurseries because individuals with Down syndrome are wonderful with children.”

MOTHER’S DREAM

“I wish we can have options for teenagers like in other countries so they can also work later as they do in other countries. Now they do not have any place where they can go for training’’, she said.

“All parents with Down syndrome children must be working very hard to get their children to develop the life skills as well as the talent to bring out the best in them’’, she noted.