Down Syndrome: When my son did not cry at birth, I knew something was wrong

Rosemary Nabooze advocates for the inclusion of children with special needs in Uganda. In 2010, Rosemary Nabooze, gave birth to her second-born child, a boy, she lived in Europe where she was studying for her Master's degree. "When my son did not make his first cry at birth, I knew it spelt trouble but I was lucky because the doctors did many tests to diagnose what was wrong with him," Rosemary says. In addition to being diagnosed with Down syndrome, the baby, who she named Avril, had a serious heart defect, hearing loss and sleep apnea. He also had serious breathing difficulties and was very fragile. Her son's condition made her stay at the hospital for one and a half years after his birth, trying to fix the different challenges that he had. Within the first few years of his life, he had six operations, an open heart surgery, hearing loss implants three times, as well as adenoids and tonsils surgery. For Rosemary, it has been a journey with mixed emotions in which she have seen him struggle to survive. However, she says Avril gives her so much joy as parents. "Avril is now 12 years old and by his eighth birthday, he had outgrown most of those challenges. Down syndrome is not an easy diagnosis and it takes so much courage and strength for the mother and the caregiver," Rosemary says. She says raising a child with Down Syndrome was an eye-opener for her. Now, she is involved in so many activities to ensure the rights of children with Down syndrome are addressed; their well-being, medical access and community engagements among others. According to Rosemary, a caregiver ought to realise a child's potential and understand who she is first because they carry that disability for their children, adding that the children are not aware of what they are going through. "Their strength is the health of their children and need to get all the information required to be able to take care of them." As a mother to a child with Down Syndrome, Nabooze realised the lack of social support for children with disabilities and the stigma they were facing and founded the Angels Centre for Children with Special needs in 2012, which provides tailored education and therapy services as well as assistance for caregivers and teachers. She believes that children with special needs go through the most challenges in school, especially where the teachers are not trained to handle such children. Some challenges include the education curriculum that is not suited to accommodate children with special needs, such as children with autism, down syndrome or cerebral palsy, whose intellect may be different from others. Other challenges she says, include sanitary and mobility challenges where some school toilets may not have grab-bars for those on wheelchairs or buildings without ramps for ease of mobility. In addition, she believes these children may experience stigma from adults, such as workers in the school or the school administration and has therefore been advocating for inclusion, diversity, and equity. As a result, in January this year, she was honoured as a Rotary People of Action: Champion of Inclusion for educating and nurturing children with intellectual disabilities in Uganda. Rmukonyo@standardmedia.co.ke

Down Syndrome: When my son did not cry at birth, I knew something was wrong

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