From The National in Saudi Arabia:ABU DHABI -- When the doctor asked Sonia al Hashimi 22 years ago if she knew about Down’s syndrome, little did she realise that her search for its meaning would change her life forever.
“I vaguely remembered a photo of a child with distinct features labelled as suffering from Mongol disease on a school board, and didn’t understand what that had to do with me,” said Mrs al Hashimi, recalling the conversation with the doctor who helped deliver her afflicted son at the Abu Dhabi Corniche hospital.
In an incubator, suffering from heart and muscle complications after a premature birth, her four-day-old son Saif was fighting for his life. As the days went by one of the nurses advised Mrs al Hashimi to “just give up” as Down’s syndrome babies “rarely survive”.
“That statement just did something to me,” she said. “It stirred in me a feeling of defiance, where I wanted to prove to the world that my son is going to make it, and he will be something special.”
Saif (pictured) has since won five medals in swimming at Special Olympics, and today Mrs al Hashimi is the president of the UAE Down Syndrome Association.Down’s syndrome, named after John L H Down, the English doctor who first described it in 1866, is a genetic disorder stemming from a chromosomal abnormality. Those with it are normally intellectually impaired, and may have stunted growth and other physical abnormalities.
“For the first five years of Saif’s life, I put everything on hold,” Mrs al Hashimi said. “I held off having more children and devoted myself completely to teaching him to become independent.”
She did everything to “stimulate” her child’s development, including regular doses of Sesame Street, muscle exercises and recreational outings. “I painted his bedroom with vibrant, loud colours, and brought him intellectual, stimulating toys,” she said, “and did everything I could to awaken in him all his senses.”
Mrs al Hashimi even learned English to be able to read books on Down’s syndrome. She eventually had five more children. Saif is now the attentive big brother.Mrs al Hashimi recalled “too many” troubling social incidents – from parents demanding that her son be pulled from a mainstream public school when she tried to integrate him there, to acquaintances asking her to keep him at home when she attended social gatherings. “It used to hurt me so much,” she said, “but I refused to keep my son locked up. If something is not perfect on the outside, then people here just reject it.”
According to recent statistics by the Centre for Arab Genomic Studies, 21.4 babies per 100,000 are born with Down’s syndrome in the UAE, about double the global rate.With the launching of a nationwide awareness campaign by the Ministry of Education and the Emirates Foundation that is targeting 70 schools, Mrs al Hashimi believes the incidents of “ignorant” behaviour could decrease and that parents of children with the condition will “come out of their shell”.
“I have already witnessed such great change and awareness,” said Mrs al Hashimi, who has already participated in two lectures by the campaign as a representative from the association.
Saif also gave a presentation and told the students: “I am normal.” He talked about his father coaching him in sport and said that, because of his father’s unshakable support, he became a professional swimmer.“I love to swim; I am a champion,” he said as he held up his medals.
The Down Syndrome Association grew from a handful of mothers with afflicted children who were running a support group in Dubai to a 300-member association.
In 2006, the Ministry of Social Affairs launched the association as a public benefit group with the aim of “unlocking hidden potentials” in people with Down’s syndrome aged from a few months to 30. It is under the patronage of Sheikha Manal bint Mohammed bin Rashid Al Maktoum, the President of the Dubai Women Establishment and wife of Sheikh Mansour bin Zayed Al Nahyan, Minister of
Presidential Affairs.
The association has several committees, including cultural, family care and sport, as well as a medical committee, of which Dr Manal Jarour is a deputy head. Being a paediatrician, she had a big hand in connecting a lot of mothers with Down’s syndrome children.
“Whenever I saw a Down’s syndrome child on the street, I would grab the parents and tell them about our support group and how they can help their child lead a better life,” she said.
Dr Jarour’s last child, Mahmoud, 10, has Down’s syndrome and she too found it difficult to get a school to accept her child.
“None of the private schools would take him in. We had to pull so many strings before Mahmoud was accepted into one of the public schools.”
Dr Jarour stressed the importance of early intervention as well as regular schooling, because without that, it will be very difficult for them to lead normal lives. “We have to get everyone involved, the families, the societies, the officials, the schools, and force them all to accept people with Down’s syndrome,” she said.
The association runs a free clinic, with occupational and speech therapists, but is in need of an Arabic speech therapist. “There is still a lot that needs to be done,” she said. “I am a medical doctor, and still I didn’t know much about Down’s syndrome and had to research. I am still learning something new each day.”
Her son, Mahmoud, has a talent for taking photos, she said, and takes his camera everywhere. Often, he would charge a fee of “a smile and a hug” for one of his photos.
His mother is hopeful he can turn his passion into more than just a hobby. “They have hidden talents, you just have to dig deeper than usual to find them,” Dr Jarour said.
Mrs al Hashimi and Dr Jarour are among the few brave Emirati women willing to discuss Down’s syndrome and the great challenges of raising up their children in a society still unaccustomed to the disability. Now good friends, the two women run an aggressive rights campaign for people with Down’s syndrome.
“You would be surprised what they can do if given a chance and the right environment,” said Mrs al Hashimi, who recently placed one of the children from the association in ballet classes.
“People said, including the instructor, it couldn’t be done, but the six-year-old girl is dancing on her toes, and she is doing it gracefully.”