How to raise children with disabilities

Raising children with disabilities (Photo: iStock) Mama Eloise Mutie, a casual worker at Isiolo Level 5 Hospital, is the mother of three differently abled children - two girls and one boy, aged between 9 and 19. She lost her second-born daughter, also differently abled, to a fire incident. She says she lives with the perpetual guilt of leaving her unattended on that fateful day because she had to go out to look for food. Bringing up her three children has been a challenging journey, complicated further by an absent father. Her husband left and moved on, blaming her for the condition of the children. The community, too, has been hostile and she has changed her home. "I have wondered why fate would have me on such a sinking ship with the children and I being labelled bewitched," she says, adding that the family makes ends meet through donations and well-wishers. Zipporah Nchekei is the grandmother of 23-year-old Leah Ntinyari, who is physically challenged, deaf, and dumb. She has never moved her limbs in her entire life and has been condemned to a bed and a couch. Her story, as narrated by her grandmother, is sad. Ntinyari was born with a disability that has condemned her to bed since birth. Her mother disappeared soon after realising her daughter would be confined for the rest of her life. She left her under the care of her frail grandmother and has never looked back. The story gets more disheartening. Two years ago, Ntinyari was raped by an unknown person, got pregnant, and went through a "troubled and traumatising experience before giving birth to a daughter. Like Eloise, Nchekei depends on donations from well-wishers for mental, spiritual, and financial support. Their environment speaks of extreme poverty. Ntinyari cannot express herself or eat. Her food can only be solid. She has no equipment to help her, and she has to struggle to have Ntinyari's food in solid form. "When I look back, 21 years later, I am grateful that despite the situation of my granddaughter, I have been able to raise her, and now her daughter, alongside my children," says Nchekei. The only regrets she has are that the person who rapped her granddaughter has not been apprehended and that Ntinyari's mother abdicated her responsibility. In the outskirts of Kakamega, deep in a rural setting, Evaline Ingasa is raising her 16-year-old son, Bruno, who is abled differently. Her parenting journey has been a tough one. Mama Bruno faces each day with new hope, believing that her son was not bewitched or given up as a sacrifice. "I feel helpless as I watch his innocence while his body is wasting away with bedsores and under continuous attack, leading to poor health," she laments. She says Bruno has outgrown his wheelchair, and getting another one is not her priority at the moment because she has to balance between buying medication for her son, providing food, paying rent, and buying diapers for him. Evaline's family never wants anything to do with her. Her mother, brothers, a sister, and an ex-husband never check on them. Often, Evaline has to lock up her son and go for long hours to fend for a living. In her absence, Elvis stays hungry and in the same position until her mother returns because there is no one to help. These examples paint a gloomy picture of what challenges parents of PWDs face, more so in rural settings, where myths rule. Lack of awareness and sensitisation has left these parents - sometimes grandparents hopeless and at the mercy of well-wishers. "Raising a differently-abled child in the rural area comes with unique challenges. However, with the right support and strategies, a parent to a special need child can create a nurturing and empowering environment for their child," says Catherine Mugendi, a counselling psychologist and family coach. Mgendi says that the challenges facing parents raising differently abled children in a rural setup include access to education, healthcare, social stigma, financial support, and lack of awareness and support networks. The family coach says that due to the extreme poverty and lack of awareness, parents of such children greatly depend on a support system of both governmental and non-governmental professionals, many of whom are not headquartered in rural areas. These challenges, she says, highlight the need for improved healthcare, education, and social support systems for families raising differently-abled children in rural Kenya. "Parents like Evaline, Nchekei, and Eloise need to go through masterclasses that will introduce them to things like what to do if they suspect their child has a disability, how to take care of them, how to cope, and the available support systems, all of which can be provided at the nearest health facility," says Mgendi.

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