By Gift Briton
In 2020, Noreen Ogina, a 39-year-old mother living in Nairobi, was filled with joy when she gave birth to her second-born son.
Being her second child, she expected the caregiving work for her son to be even less tiring. As days turned to weeks and weeks to months, the baby gained nearly all the expected age-appropriate behaviours until the sixth month when he suddenly lost all his milestones.
“He became like a newborn. He did not maintain eye contact, did not respond to stimuli, had little attention span, not smiling and many other milestones that you expect the child to pick up as they grow,” Ogina opens up.
She took her six-month-old son to a paediatrician for a medical checkup, where he was diagnosed with infantile spasms- a condition that causes seizures in babies. With this diagnosis, tension started to build and the big dreams she had for her son became thinner. Months turned to years but the child became no better in developing milestones.
At the age of three, Ogina’s son was diagnosed with Autism spectrum disorder (ASD)- a diverse group of developmental conditions characterised by difficulties in social communication and interaction as well as repetitive behaviours or interests. It has varying impacts on the victims, including challenges in mastering key learning skills.
“I cried about it. I felt like the dreams and visions for him flew away. I even hoped that the diagnosis could be wrong but when the medical report came, it hit me hard. The diagnosis just confirmed my fears because, from the time he was diagnosed with Infantile Spasms, I had always suspected that he would develop Autism. I read somewhere that Infantile Spam could escalate to Autism,” Ogina says.
According to the World Health Organization (WHO), about one in 100 children has Autism. Although the needs and abilities of people with Autism vary, WHO notes that evidence-based psychosocial interventions can improve their communication and social skills, with a positive impact on their well-being and quality of life.
Ogina embarked on a journey to ensure that her son acquired important life skills and lived a quality life. She enrolled her son in a special needs school but relocated him to several other schools before a friend introduced her to the Tuwatunze Learning Support Centre.
“Looking for school was one of the hardest tasks. For a whole year, I was just looking for a better school because I felt like there was a lot of inadequacy in most schools I visited then a friend told me about the Tuwatunze,” Ogina notes.
Tuwatunze is a special needs support centre in Nairobi that offers personalised learning services to children with learning difficulties, including those with speech, sensory, mobility, and balance challenges.
“When I came home after spending several years in special education in the United States of America, I spotted several gaps and struggles that parents go through, including not having genuinely trained qualified professionals working with their children. So, I decided to bring my experience home to impact the community. I felt that parents have been taken advantage of by untrained professionals and institutions that are not there to help their children instead they are looking at it as monetary business,” said Nyokabi Kinuthia – Founder of Tuwatunze Learning Support Centre. She is a psychologist with a background in special education and sign language.
The organisation enrolls children between 1.5 -10 years. Other than trying to meet their academic need, the organisation focuses on giving tailored services to impact the child with relevant life skills to make them self-reliant. The children engage in a wide range of learning and outdoor activities which helps in identifying their strengths.
“We are eliminating the idea that traditional education is the way to go. We tell parents the importance of life skills because life is not only about writing and reading. We teach the children etiquette and how to take care of themselves. Learning happens outside and inside the schools. I couch the parents to open up their minds,” Nyokabi notes that sometimes parents are the barriers to progress because of fear, insecurities and lack of honesty. She says that some parents lie about what their children can do which makes it hard for teachers.
“We recognize that every student has unique individual needs. We provide a program that meets the academic, physical, social, behavioural and emotional needs of every student so that each student has equal opportunities to succeed and become a contributing member of society.”
Ogina enrolled her child in the Tuwatunze program in 2023.
“Before I took him to Tuwatunze, he was in his world. He was doing his things. You could place him with other kids to play with but he plays with his toys. He is not making any effort to interact,” she notes adding that all these have been dispelled at the facility, with the child now able to play with other children and make eye contact, he reacts when you call him and things that please him from facial expression.
“He is able to take instructions. Like he never used to respond to his name. these days he responds. They have taught him how to take care of himself like personal grooming. He can brush his teeth and other life skills that come with growing up.”
On 13 April 2024, Tuwatunze and MarathonXP, a leading Kenyan experience design company, hosted an Open Day event dedicated to shedding light on the obstacles encountered by children grappling with learning disabilities, including those on the autism spectrum.
During the event, Eric Wokabi, Country General Manager at MarathonXP remarked: “As advocates for inclusive education practices, we firmly believe in nurturing environments where every child can flourish academically and personally. This event presents a valuable opportunity to amplify awareness and promote collaborative efforts in supporting children with learning disabilities.”
