A Mother’s Quest for Conquering Limitations
Sounds of children clapping and reciting grew louder as I stepped closer. Once I entered, I was greeted with smiles and startles of women and children alike. The room – unconventional in ways more than one – screamed creativity and optimism. The walls were painted in fiery-red and mustard-yellow. Books, musical instruments, and toys co-existed in one room. When a woman asked the children to form three words with a Bangla letter, one swiftly answered, demonstrating an inclination towards learning. These children had a common denominator: special needs.
I knew nothing about her, and yet, I was there at the footsteps of her organization, waiting anxiously for the face that would embody the humble yet assertive voice I heard over the phone. While I sat leaning against the pink low tables, slightly bending and perspiring, Rizwana Islam emerged with a smile that brightened up her eyes with contagious positivity. I felt completely at ease as she led me to a quieter classroom and settled for the interview.
With academic and professional backgrounds in Architecture, what led her to establish Alternative Learning Centre (alcforchildren.com), a school for children with special needs? Rizwana was elated when she was blessed with a baby daughter. She soon observed strange characteristics in the baby. Amongst other things, the baby would not look when her name was called out and would not feed naturally like other babies due to lack of lip control. Local doctors prescribed medical tests and medications, which further weakened the baby’s immune system. Eight months passed before doctors abroad broke out the news: her daughter suffers from mitochondrial development disorder. Consultation with various doctors at home and abroad pointed towards one reality: there could be little improvement, if any, in the baby’s development. Rizwana was devastated, but a mother’s love remained undefeated. Indeed, her resilience reflected as she recounted the story without any measure of despair and with unmatched tranquility.
In Bangladesh, social stigma is attached to autism. Working mothers are accused of inviting autism by not paying attention to children. Worse still, mothers are blamed for giving birth to “God-given curse.” Rizwana herself was faced with pitiful looks, questioning why her third child did not “turn out normal” and linking the situation with displeasure of divine powers.
Globally, since autism mostly affects men, autistic females remain largely ignored. National Autistic Society in UK reveals that many girls are never referred for diagnosis even if their symptoms are severe and are deliberately excluded from research studies. According to Autistic Children’s Welfare Foundation in Bangladesh, 1 in every 150 girls is affected by autism. Experts estimate that about 3-6 children out of every 1,000 will develop autism. Due to lack of formal research, it is assumed that about 300,000 children in Bangladesh are affected.
Little attention is paid to the influence that gender plays on autism. Girls have needs and interests different from boys, which are usually not taken into account during diagnosis. In most cases in Bangladesh, it has been found that girls are more vulnerable than boys as they are sexually harassed. Clearly, autism and women’s rights to health and education are emerging and integral yet neglected facets of worldwide women’s empowerment movement.
Despite the challenges, Rizwana never viewed the disorder as a barrier for her daughter towards attaining a fuller life. With a progressive mind, she approached reputable mainstream schools for her daughter’s admission. To her utter dismay, most of these schools, which claim to be of international standards, did not provide the environment where females with autism and special needs could thrive. They did not offer customized education. They did not dedicate private space to females for feeding. It was evident to Rizwana that they were not prepared mentally to include such facilities. With a heavy heart, she shifted her target on special education schools. Dimly-lit, claustrophobic, and musty, these sub-par schools employed baby-sitters instead of teachers. “I want physiotherapy to be done by experts not by low-skilled women,” asserts Rizwana, her tranquility suddenly broken with her soft slap on the desk.
Rizwana noticed an unfulfilled need. In 2011, with emotional support from her husband and advice from her sister, Dr. Farzana, a pediatrician who treats autistic children, Rizwana established a non-profit school on the ground floors of her residence. She employed experienced doctors and teachers. She created an inclusive, stimulating environment required for mental health. Open space is a key feature in the classrooms. Hygiene education is incorporated in the school curriculum. She speaks of “toilet training,” a technique involving repeated words and activities, which enabled her daughter and other females to discontinue the overuse of diapers. Rizwana aims to overcome the social segregation and integrate children with special needs into the mainstream society by opening the doors of her school to children with and without special needs where they could all interact and learn from each other just for an hour.
Rizwana’s most pioneering step is the training and motivating of mothers, female educators, and caregivers to nurture autistic children. Currently, in Bangladesh, there are no training institutions for this purpose. Furthermore, she has distributed autism-friendly calendars and stationery items to 50 different schools in the country with the aim of promoting awareness on the issue. Despite low response, her spirit is undeterred. She fills the communication void through social media, particularly Facebook and e-mail. While resources were initially devoted to school development, she has decided to scale up expansion efforts. She plans to recruit committed youth volunteers and link up with corporations and INGOs. She is adamant in accommodating 8 more children alongside the existing 14 in the school.
“Many say autistic girls do not need education. They only need discipline. I oppose. Education is a basic right. If her eyes are fine, that’s the medium and outlet through which we will reach her and she will express herself,” Rizwana stresses, baring her unwavering passion for autistic girls’ rights to education. I realized: when a resolute mother sets out to correct things, she is almost always successful.
This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous digital media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.