Tuesday 23 / April / 2024
While there are 8,381 children with special needs in the Sultanate, according to the National Centre for Statistics and Information, our story this week is not about numbers or statistics; it is a heartwarming tale of those mothers who have defied all odds to raise their children with special needs with utmost love and immense mental grit. Their continuous struggle towards ensuring their child’s development, health, and security is what makes them special. As we commemorate Mother’s Day we salute the indomitable spirit of these mothers who are truly special.
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“It is easier to give up, but harder to stay and continue to fight,” says Halima Al Balushi, mother of Hoor, who has Down syndrome. “When Hoor was born, I didn’t know that she had Down syndrome. Even the doctors did not tell me because at the time of birth she did not have physical deformities or symptoms and they discharged me a day after her birth,” remembers Halima, a mother of five, Hoor being her last-born. Unlike the usual cases of Down syndrome, Halima discovered her daughter’s condition a month later when she fell ill and needed to be admitted. “That is when they did some tests and diagnosed her. When the doctor told me, I immediately accepted the reality and began researching into the condition,” remembers the brave mother, whose never-give-up attitude is what keeps her going.
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Aisha Al Sanidi has five children, of which three have special needs — Mohammed, 15; Sheila, 13; and seven-year-old Abdullatif. Contrary to the other two mothers, Aisha discovered her children’s disabilities before their birth. “I was informed of the condition of my children during pregnancy checkups. All three of my children are mentally impaired, and they were diagnosed with the Dandy-Walker syndrome. It is a rare disorder caused by the lack of cerebellum and presence of liquids in the brain, which delays the process of movement and pronunciation,” she adds.
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Fatima Al Farsi, who has two children, a seven-year-old diagnosed with autism and a three-year-old, discovered her son’s condition only two years later after his birth. “My child was normal at birth. When he was two-and-a-half years old, he began to lose words and repeat certain actions. This is when I began researching his condition,” she adds. Despite going through a lot, Fatima has not lost hope and has continued to be optimistic, turning her child’s illness into a force that made her a stronger mother. She says, “Life is a journey of struggle, pursuit, optimism, and hope.”
Moms of children with special needs have a tough job. On top of their regular duties as that of a mother, they often have extra appointments, their children have more difficulty in doing things, and they have less time for themselves. They get very little sleep, and sometimes even endure phys ical anguish. And they still love their children with everything they have.If you have never known a mom who has children with special needs, then her superhero status is unknown to you. Seriously, there isn’t anything she can’t do. She runs on very little sleep and does all of these things plus a million others all day long, every day without fail and with a smile.
Talking about the day-to-day hardships they go through, Fatima said it is tough to stay in an area that has no rehabilitation centres for autistic children. “The closest centre we can go to is the social welfare centre, which is more than an hour away from our home. The centre has a limit on the number of autistic children it can take, which means there are many patients already on the waiting list,” she adds.
“Our journey has been prolonged many times by misdiagnosis, medical errors and other things that have terrified us, but nevertheless I have spent a great deal of time researching his case and ensuring that my child’s life is as comfortable as it can be,” Fatima says.
Taking proper care of a child with special needs is not an easy job; it takes tremendous effort, patience, and care. Halima has been lucky in this as she had the government’s support that took care of her child’s health expenses. “Since Hoor was born in the military hospital, all her health expenses are covered. In terms of her education, I wanted her to have the best training and rehabilitation possible, and so when she was two, I enrolled her into an early intervention centre,” she adds.
“We live in Barka but my daughter goes to the centre in Athaiba, and so every morning I drop her to her bus in Mabela, which then takes her to Athaiba. We did this for three years. This year, I moved her to an association in Barka so that she is not stressed physically or emotionally, due to the long journeys,” Halima says.
“Thanks to the early intervention, Hoor has been able to build a strong foundation, developing her in all aspects, psychologically, intellectually, and mentally,” she adds.
Halima always ensured that she corresponded with the centre as much as she could to make sure that Hoor had the same plan in school and at home.
For Aisha, being committed to her children’s care meant travelling nearly eight hours everyday for their treatment in Muscat. “We used to travel long distances in order to get to Muscat at a specific time, where they undergo treatment for not more than an hour. Then we would drive back to Jalan,” Aisha says. She adds, “The monthly cost of the treatments and specials needs for all three of my children exceeds OMR1,000”. The hard work and love that these mothers put into caring for their special needs children is heartening. Despite all the obstacles they face, their patience is a testament to the unconditional love they have for their children.
“I strive to teach him some skills every day so that he can gain from even a small part of it. Being a working woman, I always ensure that I have a plan in advance,” says Fatima.
Aisha went to Thailand in January 2015 for the treatment of her children. She stayed there for approximately four months.
“The Ministry of Health covered our expenses during that period. When I returned, I was insistent that they should continue their treatment but it was difficult to leave my village and move to the capital,” Aisha says.
As many mothers of children with special needs tend to also have other children, finding a balance between caring for all of them is paramount.
Halima says, “Thankfully, the relationship between Hoor and her other siblings is very good. I instilled in them the idea not to view Hoor as a child with a disability. She is involved in their daily lives, whether it’s eating, playing, or dressing up.”
While working mothers always struggle to strike a balance between raising their children and their work, for these ‘special moms’ finding a middle ground is even tougher than the rest.
Fatima says, “As a teacher, I spend most of the day in school. At this time, my child is in the rehabilitation centre. When I return, I start our afternoon sessions with simple games. Taking him out for a leisure trip daily is a must. I thank God, as things are much easier now”.
For Halima who is a freelance businesswoman it was easy to balance her work life along with caring for Hoor because she never considered her as a child with misfortunes. “Thankfully I never struggled with her,” she adds with a smile.
With over 20 years of experience in education, two years as a teacher and 18 years as a principal, Aisha has taken it upon herself to make sure she excels at work and in caring for her children.
“With the help of God Almighty, I was able to reconcile between the two. Being a school principal, I aimed to achieve excellence in my field of work and ensure that my children receive their rights in terms of my care and attention,” she says.
Despite all the challenges she faces, Aisha has been able to achieve much success at the governorate and national level in her field of work. “With the help of my children, I was able to overcome many of their health obstacles,” she says.
Furthermore, Aisha has been able to use her journey to help other mothers by opening a centre for special needs in her village of Jalan Bani Bu Ali.
“In my final year as a teacher in 2016, I began the procedures of establishing the centre, I thought of this project after realising the scarcity of physiotherapy services for people with special needs in my area,” she says, adding, “I wanted to help all the children in my region.”
Aisha said that she faced many challenges while implementing her project, because many parents believe that a disability cannot improve, in addition to her own fear of failure. “Despite everything, I was insisting on providing a high standard centre,” Aisha says.
Ensuring that children with special needs are involved in different activities aids in their development as individuals.
“Since she was young, Hoor participated in a number of activities and events. During the Spartan Race in Jebel Sifah, at three years of age, Hoor was the youngest participant,” Halima says, adding that, “Hoor also participated in Nabti tree day and in the Saham Olympics in which she won third place, in addition to participating in the Oman sailing tour”.
The social condition of children plays an important role in developing them as individuals. “I treated my kids as normal children. I took them out of our surroundings and made sure that they interact with our extended relatives and even strangers,” Aisha says.
She adds, “Their treatments were not solely in hospitals and clinics, I found that social interactions were stronger than any antibiotics or machine.”
“Many times, parents of children with special need are ashamed or embarrassed to take their children out. I ask every mother to be proud of her children, whether they are normal or with special needs. They should always remember that children are a blessing from God,” Halima said.
