KHARTOUM - (Rogia al-Shafee – Sudanow) The main characteristic of these kids is love, truthfulness and good manners. They are God’s angels on Earth.
That is what Ebtihaj Mohammad Oahaj, founder and director of the Sudan center for children with the Down syndrome, says.
Down syndrome (DS or DNS), is a genetic disorder caused when there is an extra chromosome (chromosome is a threadlike bodies that carry the genes). Normally, the human body has 23 pairs of chromosomes and two sex chromosomes. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome
Established in 2011 in the Eastern Nile District of Khartoum, the center is the only one in Sudan. It is concerned with the psychological, social and bodily rehabilitation of children with this disability. Grownup children receive academic and vocational training. In addition, the children are subjected to sports and verbal communication programs. They also receive medical care and their families are trained on how to deal with them.
With determination and persistence Ms. Ebtihaj has managed to overcome all difficulties.
In a Sudanow interview, Ms. Ebtihaj spoke, at length, about the conditions of this category, her achievements as regards these kids, currently 54, and her experiences on how to handle them throughout her long journey among them.
She said the center was launched upon an initiative from her older brother Eihab who happened to receive a baby with this disability. Eihab for some while thought of leaving the country to where he could live and find care for his newborn. Because Eihab was the family’s man, Ebtihaj stopped him from leaving them, suggesting instead that he funds a specialized center to look after his son and other kids who might come along. The well - off Eihab welcomed the idea without hesitation, just asking where he could find a qualified person to run the facility. She said she would do the job and immediately resigned her job as a primary school teacher and embarked on preparations for the center, finishing all the necessary paper work and the selection of qualified teachers and trainers. “My motto was devotion and faith in what I am doing. It was my conviction that success needs diligence and not just money.” says Ebtihaj.
“That, thank God, had helped us to score big successes,” she says.
The first thing they had done was to select a building with a spacious yard where the children can play and move freely and also for adequate ventilation. The job was done in a short time and the children were called to register. They instantly received a wide response from parents of children with this condition.
“It is true that the Ministry of Education has a lot of centers to look after children with mental disabilities, but there isn’t any center which is specialized in the training and rehabilitation of children with the Down syndrome other than this one,” says Ebtihaj.
She said her center develops the children’s bodily capabilities, rehabilitates them psychologically and socially and corrects their communication problems in a way that upgrades their skills. Painting, theatre and sports were introduced in the center as basic programs. The center also has a program for early intervention for children above 9 months old. The center also runs communication and muscle-building sessions as basic programs in the daily timetable.
“Because I believe in the value of sports, I have hired Syrian trainer, Mr.Tamir Abdu al-Abbas, who is specialized in coaching the mentally disabled children and who has now uplifted our kids a good deal,” she says. A good effort was made to prepare the children for the kindergarten and primary school stages with respect to reading and writing. A lot of children have been integrated in kindergartens and schools with continuous center supervision from Ms Ebtihaj herself who regularly calls at the schools to see how the kids are progressing. The center also keeps up steady medical and nutrition follow up of the kids.
The center has held a lot of workshops after which Sudan’s first curriculum for persons with mental disability was written. The curriculum was endorsed by the Sudanese curriculums center at the Bakht Arreda University and was registered with the Sudanese Intellectual Property Agency. In a show of solidarity the curriculum writers donated their financial dues to the center. The curriculum is in keeping with that of the Sudanese schools and kindergartens.
According to the curriculum, the Down syndrome children were classified into three categories:
(1) An educable category which is integrated into schools and kindergartens.
(2) A category liable to vocational training and (3) A category that can just take care of itself.
The center employs the arts in the learning processes. The learners do have a sense of colors. They perform well in secretarial work, plasterwork and hand work in general. They present excellent work in these areas and this has prompted the center to introduce vocational training on handiwork for its grownups in order to help them acquire a profession and depend upon themselves in the future. Some learners have also acquired skills in horticulture, photocopying and ID covering. Many of them have been absorbed in the labor market and became productive and self-reliant.
Females have realized their identities in housekeeping and cooking. They are trained by nutrition ad housekeeping experts in three phases: In the first phase they are familiarized about kitchenware, namely cooking and electric equipment and how they are used. They are also acquainted with spices, detergents and the different types of food presented in every meal. In the second phase they are trained on making tea, coffee, pies and salads and how they are presented. In the third phase the girls are trained on dining table arrangement; how bottles and vases are laid and how to ornament dishes with vegetables and the cups with fruits.” Our girls have love for housekeeping and are eager to learn and help their families and that is what we are after,” Ebtihaj says.
She says the kids had kept presenting their creations in festivals organized by the Khartoum State Ministry of Social Welfare. “They present spectacular works, an indication that if they are well cared for, these kids will discover their hidden capabilities and play a positive role in the society,” says Ebtihaj.
The kids had also used to participate in the celebrations marking the international days on disability, national festivities and painting galleries organized in and outside Sudan. The children had taken part in the recent festival on creativity in Morocco where they presented a two-hour show of Sudanese traditional dresses, past and present.
Children Basil Eihab, Yousif Osman and Mohamed Eihab have collected a lot of awards over two consecutive years. Children Ahmad Dafa’alla, Mohamed Eihab and Yousif Osman have recently presented a pantomime play in Tunis. The play was produced by theatre lecturer Abdelhakim al-Tahir.
“These kids are pure and transparent. They have a feeling for those who accept them and respect their shortcomings. They value a tender touch, they acknowledge it when you smile to them and if I forget to smile for anyone of them, he/she would ask why I am so upset,” says Ebtihaj.
The smile means quite a lot for them. It takes them into the worlds of peace of mind and psychological stability. ”That is why I drop all my daily preoccupations at the center’s doorstep and make it my duty to bring happiness to them and feel happy for the rest of the day,” says Ebtihaj.
The kids have a high sense of responsibility and after a certain act they perform they would ask whether it was well done.
“Nevertheless, we feel sad because we are unable to accommodate all the children who come to us because the center’s capacity is limited and the numbers are growing. That is why we are contemplating other centers around the country. We have enough expertise and we just lack funding. From here I entreat philanthropists and businessmen to spend on this category. The education of these kids is expensive. It needs suitable verbal communication and sports equipment.
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