Easing care burden for children with disabilities in Kiambu

Sister Brenda Soteri a nun at Kisima Special School during an interview. [Fidelis Kabunyi, Standard] About 20 years ago, the administrators of a nursery school in Kiambu County were surprised when a woman brought an autistic child and dumped him there. She insisted that the teachers remain with the child for the day so that she could do some manual jobs nearby. This became a daily occurrence. Soon, more parents with special needs children followed suit. The Catholic Church's Daughters of Charity lay group founded the nursery school to serve rural Ndeiya. Sister Rhoda Mose, an administrator at the school, says they later learned that neuro and physical disabilities were rampant in Ndeiya. They began door-to-door campaigns and found more children with special needs living in dissolute conditions and took them in. In 2003, the school was converted into Kisima Special School Centre to cater for children with disabilities. "Currently, the school holds 65 children and young adults, while there are over 300 special need cases who are waiting to join the institution, but because of limited facilities and financial constraints, the institution can't hold more," she notes. In Ndeiya, most parents with children with disabilities lag economically because caregiving for such children is full-time, making it impossible to engage in income-generating activities. There is also stigma. Many young women who give birth to disabled children abandon them with their ageing parents - sometimes after being chased away from their marital homes. Notably, Kisima Special School Centre provides respite care. Respite care is the short-term relief for primary caregivers when they leave children at the centre, enabling them time to work and earn. For many parents of children with special needs such as 38-year-old Grace Waithera, what bothers them is whether people with special needs can wholly be integrated into normal social life as well as ever being independent. The children lag intellectually and health-wise if they do not benefit from therapy available at institutions such as Kisima. According to a 2015 report by the United Nations Educational, Scientific and Cultural Organization, (UNESCO) 93 million children under the age of 14 are living with moderate or severe disability. Waithera's family comes from the sleepy village of Ruthigiti. Waithera says that three days after her firstborn daughter Christabel Owano was born 13 years ago, doctors at the Kijabe Hospital diagnosed her with cerebral palsy (CP). They explained to her that she may not walk or talk for the rest of her life. The doctors recommended she be placed in an institution where she could get therapeutic sessions thrice a week and immediately start neurological treatment. As a first-time and young mother, Waithera says she was confused, devastated, and depressed. For eight years, her child was not able to get consistent medication and therapy sessions, which were too costly for her. "It is costly to maintain a CP patient; I don't have the finances to put her on neuro-medication and therapy. She is fully dependent on me. I resigned from my place of work since no house help or family member was enthusiastic about taking care of my daughter. She can't move or talk; I must do everything for her," says Waithera. She cannot maintain a full-time job because Christabel's life depends on her. Special children's daily needs prevent most parents from being able to work full-time. "She needs a wheelchair and a walker frame ... I'm not able to raise even a quarter of that money for her wheelchair," she says amid tears. Another parent, Hannah Mwangi, a resident of Kamirithu village says raising a child with a disability causes significant life disruptions, increased levels of distress, and marital tension, especially with in-laws. Hannah says her husband left on their autistic son's third birthday. His departure was triggered by a prolonged period of tension from her in-laws, who blamed her for having a particular child, saying that she was cursed. The separation led her to depression, eliciting feelings of low self-esteem and shame. However, thanks to an initiative by Kisima School to financially empower parents, Waithera and Hannah have become economically independent after receiving Sh10,000 to start a business. Waithera runs a smokie and eggs business that earns her about Sh350 a day. She says she got a reprieve after the school assisted in caring for her child during the day, which gave her time to attend to other family issues. She received two goats and plans to sell them after they give birth. Kisima Daughters of Charity is under St Vincent de Paul, a larger Catholic group that funds the institution. It also receives funding from well-wishers who make personal donations, including special wheelchairs, fuel, foodstuffs, and diapers. The institution assists parents and children by providing medication, therapy, and skills to enable the children to become independent. "We also give them skills for daily living, grooming, brushing their teeth, washing dishes, cleaning, and serving others. Others bake and make key holders and mats, among other life skills," notes Esther Muchiri, a head teacher at the institution. According to Muchiri, special children have more learning challenges than mainstream school children. They take longer to achieve what other learners find easy. She says her teachers train caregivers to handle children who require patience and special attention. Running one class in the institution requires at least Sh500,000, and a parent can spend up to Sh40,000 a month on medication, diapers, and respite care. The special children depend entirely on respite care and require a teacher, physiotherapist, occupational and speech therapist, and three full-time caregivers. The children use sensory integration and the Montessori curriculum to manipulate items at the foundation level. Hannah Njoki was admitted to the institution when she was ten years old. She was diagnosed with mild autism. Through the years, Njoki has hit milestones and has been employed as an exceptional cook for the nuns for the last three years. According to Dr Brian Njoroge, a neurologist at Ubuntu, an NGO that works with special needs institutions, the earlier you start treatment, the better. "Physical and speech therapists can help your child with sitting and walking properly, developing speech, and learning to communicate. Occupational therapists teach everyday skills like how to get dressed, eat, or use a computer," he says.

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