A Mother’s Journey and Advocacy for Children with Special Needs
Najma Ahmed, a Somali woman living in Mombasa, Kenya, has found peace and purpose in her life through her 19-year-old son, who was born with Down syndrome. Her journey has not only transformed her own life but also inspired her to become an advocate for children with special needs.
Understanding the Challenges
Down syndrome is a genetic disorder caused by the presence of an extra 21st chromosome, leading to developmental delays and distinct physical features. There are three main types: Trisomy 21, translocation, and mosaic. Symptoms vary from person to person and can include intellectual disability, heart defects, and characteristic physical traits like a flattened facial profile.
Najma has lived with the challenges of raising a child with Down syndrome for 19 years, and she understands the pain that comes with it. She believes that the stigma surrounding these children often starts within their own families, making acceptance the hardest step.
The Role of Family and Community
Once a family accepts a child with special needs, it becomes easier for the community to accept them as well. Najma emphasizes that many people do not understand the struggles mothers face daily. She believes that these children have hopes and dreams, just like any other child.
She highlights that many famous individuals, such as Jack Dorsey, co-founder of Twitter (now X), and comedian Steve Harvey, had disabilities but still made significant contributions to society. This shows that children with special needs can achieve great things if given the right support.
Personal Experience and Awareness
When Najma gave birth to her son, she was young and knew nothing about Down syndrome. The pediatrician’s initial questions left her confused, but he reassured her that everything would be okay. Raising her son was challenging, especially because his immune system was weak, and he got sick easily. However, he improved as he grew up.
Education was another hurdle, as he learned at a slower pace than other children. Najma had to stop working and studying to focus on his care. She was lucky that her family eventually accepted him, especially her mother, who became his best friend.
Campaigning for Change
In 2023, Najma launched the ‘#Don’t Hide Me’ campaign with Safe Surgical Aid (SSAID) to raise awareness about the plight of children with special needs. She believes that many of these children are hidden in boarding schools or homes due to outdated cultural beliefs.
Najma and her son go everywhere together, and she emphasizes that children with special needs are very sensitive and learn quickly socially. She advises people to speak to them nicely, as they can sense emotions even if they cannot hear words.
One day, her son reported a fight between her and her husband to his grandmother, which surprised Najma. This experience reinforced her belief in the emotional intelligence of children with special needs.
Advocating for Better Terminology
Najma’s advocacy work began at the Kwale Mentally Handicapped School, where she was deeply affected by the term “mentally handicapped.” She and SSAID wrote a protest letter to the Education Ministry, urging a change in terminology. The ministry responded positively, directing all regional and county education directors to update the language used for these schools.
The letter, written by Education PS Julius Bitok, referenced Kenya’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2008. Article 8 (1)(b) mandates member states to combat stereotypes and harmful practices.
Medical Support and Future Goals
Najma also advocates for free medical attention for children with special needs, as many families cannot afford the costs. She believes that government support would make a significant difference in their lives.
In 2024, Safe Surgical Aid and #DontHideMe organized a medical camp at Garissa Special School, where 61% of the patients had more than one disability. Additionally, 92% of the children lacked proper documentation for registration with the National Council for Persons With Disability.
They plan to conduct similar camps in Wajir and Mandera soon, continuing their mission to support children with special needs.