Rosemary Nambooze honoured for helping children with special needs
“Every child deserves to live with dignity and to be given the best chance at a bright future. I am honoured to receive this award and I will continue to be a voice for these children and break the silence on disability by assuring they’re recognised as equal members of society. Behind every disability is a human with the potential to flourish,” Rosemary Nambooze, an advocate for special needs children said after being honoured by Rotary.
Nambooze is one of the six Rotary members around the world that is being honoured as a Rotary People of Action: Champion of Inclusion. This is a reward for her work in educating and nurturing children with intellectual disabilities in Uganda.
Nambooze is a mother of a child with Down syndrome and says nothing prepared her for what would become of the child she has no qualms of having.
“During pregnancy, there were no signs that there was anything wrong with the baby. However, it was later discovered that the baby had a very low foetal heartbeat, hence being put on oxygen as soon as he was born. It was then that one medical emergency after another started unfolding. Eventually, a diagnosis of Down syndrome, an intellectual disability, was given,” she says.
Apart from limiting intellectual abilities, it also affects how different body parts work. In Nambooze’s case, her son started walking at six years while talking happened thereafter. The sum of it all is that the condition delays every stage of growth in a child.
Experiencing this for the first time, Nambooze struggled to raise her special needs child. However, the challenge birthed in her a vision. From resigning her job in order to take on her new responsibility, to being in hospital for a year and a half in Belgium. “I spend my days changing dippers, bathing him, feeding him, improving his functionality and quality of life and giving disability a human face,” she says.
In all this, she wondered how other parents with children with such conditions were managing.
Therefore, for the last 10 years, Angels Centre for children with special needs has been advocating for the rights of children with disabilities. More than 120 children have been supported because she understands that some of these children suffer from speech delays, mobility challenges, motoric movement delays and need rehabilitation. “Improving intellectual disability, access to infrastructure, tools and the environment are some of the things we focus on,” she says.
Nambooze says there is a lot of untold emotional pain a parent experiences when they have a special needs child. That pain cannot be measured in words. “I saw my son as a baby, struggle on oxygen. He has been subjected to a number of surgeries including a heart operation. It was a difficult time and at some point, his sense of hearing became impaired,” she says.
Nambooze says Uganda hardly recognises children with intellectual disabilities, and yet, they require extra support and learning materials and adaptation. “For Rotary to recognise my efforts, I am elated and I feel honoured, especially because this is increasing the visibility of the plight of children with special needs.
Access to services such as education, healthcare, community participation and many other services for children with special needs should be a national concern. I am happy that Rotary International, one of the biggest platforms in the world, is amplifying the voice that change the plight of children with disabilities,” she says.
Sharing about the plight of parents, Nambooze says when one becomes a parent to a child with special needs, every day they wake up, they become a human right defender. That is because the child is entirely dependent on you. You wake them up, take them to the bathroom and bathe them, feed them, dress them and do everything for them.
“I am lucky because I do not have to take care of my son alone but we have to support him when he wants to use the washroom. If he wants to brush his teeth, you have to help in him do it. It does not matter how old he gets. Children with such a condition usually have other health complications. Our son was born with a heart problem, so we have to do heart reviews at least once a year. He also suffers from insomnia, breathing challenges, and we are always in and out of hospitals for checkup ups. You can imagine how a mother in a rural area manages. We have to learn that these children never chose to be that way and if you do not help them, no one will. And this has taught me to accept people the way they are and judge less. Love, patience and compassion, acceptance and humility are important virtues on this journey and it must be accorded to others,” she says.