By Fidelis Kabunyi
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 in the neighborhood.
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, Kiambu County.
Sister Rhoda Mose, an administrator in the school, says they later learned that Neuro and physical disabilities were rampant in the Ndeiya area. 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, catering to children with disabilities.
“Currently, the school holds 65 children and young adults; on the waiting list 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.
The children at this facility range between 3 and 27 years, and many are unable to speak or move due to illnesses such as cerebral palsy, Down’s syndrome, and Autism, among other neurological disorders.
In Ndeiya, most parents with disabled children have lagged economically because caregiving is full-time, and they cannot do other economic activities.
There is also stigma. Many young women who give birth to disabled children abandon them with their aging parents sometimes after being chased away from their matrimonial homes.
More than 60 families have now become regular visitors at the Kisima Special School center, where they receive psycho-social and medical counseling. This allows children with special needs to become independent and successful in their lives.
Notably, the center provides respite care.
Respite care is the short-term relief for primary caregivers when they leave children at the center, enabling them time to work and earn.
For many parents of children with special needs, such as Grace Waithera, 38, the questions they ponder are, will it ever be possible for people with special needs to be wholly integrated into a social life? Are they ever likely to become independent from a state of constant care or turn them into human capital?
However, children with special needs lag intellectually and healthwise if they don’t benefit from therapy available at particular institutions such as Kisima. Without such therapy, they may never become independent in life.
Global statistics indicate that approximately one billion people have some form of disability, with over four in every five persons living in developing countries.
According to a report by UNESCO dated 2015, of these, 93 million are children under the age of 14 living with moderate or severe disability.
The Global Monitoring Report 2010 stated that of an estimated 77 million children excluded from education, a third were children with disabilities (UNESCO, 2010).sub
Waithera’s family comes from the sleepy village of Ruthigiti, Ndeiya, in Limuru.
Waithera says that three days after her firstborn daughter Christabel Owano was born 13 years ago, doctors at the Kijabe Hospital diagnosed her daughter 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 can 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.
“Christabel, as I fondly call her, immediately after birth became a crybaby; she cried for 24 hours a day; what was to be a bundle of joy became something else I couldn’t explain; raising a child with a disability has had a significant impact on my personal, social, emotional and social facets in my life,” she says.
Waithera began an expensive and tiresome journey in disability-related treatment for her daughter, including three surgeries, medications, and therapies, which she eventually couldn’t afford.
“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. I can’t maintain a full-time job because her life depends on me. Special children’s daily needs prevent most parents from being able to work full-time. Mothers’ abilities to work are hindered by the time commitment their caregiving responsibilities, including the need to work reduced hours,” she notes.
Waithera lives in a two-roomed iron sheet rental house. She looks disturbed and unhappy. She tells us that maybe her daughter’s condition could have improved if she could afford a special wheelchair combined with assisting devices (all of which cost Sh50,0000), consistent medications, and therapy sessions. “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.
Like other schoolchildren, Christabel is immobile and cannot use any means of transport. Her brittle bones make it sensitive, so she has to use the school van, which is specially fitted for special children.
Another parent, Hannah Mwangi, a resident of Kamirithu village, refutes the famous African proverbs that state that it takes a village to raise a child. Raising a child with a disability causes significant life disruptions, increased levels of distress, and marital tension, especially with in-laws.
Mwangi says her husband left when she was on her autistic son’s third birthday, triggered by a prolonged period of tension from her in-laws, who blamed her for having a particular child, citing 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 Mwangi have become economically independent after receiving a Sh10,000 business kitty to start a business.
Therefore, the initiative by Kisima Special School has positively impacted the families of disabled children. The average daily earnings of Sh350 may seem modest. Still, when accumulated over a month, it can make a significant difference in the lives of these families, especially in regions where the cost of living is higher while incomes are very low.
Waithera, who runs a smokie and eggs business, says she got a reprieve after the school assisted in caring for her child during the day. This gives her time to attend to other family issues. She received two goats for Mwangi 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 children are from Kwambira, Kinoo, Kikuyu, Limuru, and surrounding areas.
The main aim of the institution is to provide a safe place for special children and to give respite care to both the child and the parent, which allows the parent to work and live a normal life since the children are fully dependent.
The institution assists parents and children by providing medication, therapy, and skills to enable the child to become independent.
“We also give them skills for daily living, grooming, brushing their teeth, washing dishes, cleaning, serving others, there are others who bake, 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 are already trained and train caregivers to handle children requiring patience and special attention.
She draws our attention to the fact that an institution needs over Sh500,000 to run one class, and a parent can spend up to Sh40,000 a month on medication, diapers, and respite care.
Additionally, in respite care, the special children are entirely dependent and require a teacher, physio, occupational and speech therapist, and three caregivers full time.
At the foundation level, the children use sensory integration and the Montessori curriculum for the manipulation of items.
Hannah Njoki was admitted to the institution when she was 10 years old. She was diagnosed with mild autism. Through the years, Njoki has hit milestones and has been employed as a special cook for the nuns for the last three years.
Kevin Gatonye, a physiotherapist at the nearby Holy Cross Physio clinic, has dedicated himself to physio sessions for the special children in the institution and beyond.
He says that the muscles tend to shorten due to long-term immobility and poor posture caused by the patient’s muscle imbalances, causing disability.
“Most of the conditions we treat include cock up the sprint and Wrist drop by use braces, standing frame among other equipment for both lower body, knee, ankle, hip and foot orthosis, depending on which milestone a patient is late,” he says.
According to Dr Brian Njoroge, a Neurologist at Ubuntu, an NGO that works with special needs institutions, the earlier you start treatment, the better. Children with these conditions usually hit the same milestones as other children but at later stages. So, therapy is to help children with the disorder meet those milestones.
Ubuntu, a non-profit organization, has partnered with Kisima, where the school has negotiated lower prices for neurological medications.
“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,” says Dr. Njoroge
Njoroge notes that lateness in treating this patient causes secondary deformity, including muscle imbalance, poor posture, poor feeding habits, and bony prominence.
Down syndrome, also called trisomy 21, happens by chance and isn’t caused by anything a parent did or didn’t do.
He says treatments are based on each person’s physical and intellectual needs, strengths, and limitations. Services early in life focus on helping children with Down syndrome develop to their full potential.
On the other hand, autism is a neurological disorder (dysfunction in the brain and nervous system) with no physical characteristics. People with this condition often prefer to be alone and not socialize.
In Kenya, Article 54 of the Constitution expressly guarantees the right of people with disabilities to be treated with dignity and respect and to have ‘access to educational institutions and facilities for persons with disabilities that are integrated into society to the extent compatible with the interests of the person.’
The 2009 National Special Needs Education (SNE) policy recommends inclusive education as an appropriate means through which learners with disabilities can access education and give the highest policy and budgetary priority to improve education services so that all children can be included regardless of differences or difficulties.
Kiambu Governor Kimani Wamatangi signed the Kiambu disability bill in June 2024, which applies to people with disabilities in the county.
The principal object of this Bill is to provide for the rights and rehabilitation of persons with disabilities and to achieve equalization of opportunities for them.
The Bill establishes the Kiambu County Board for Persons with Disabilities, provides for its administrative framework, and prescribes its functions and the powers of the Board.
The Board shall comprise key County officials and other appointees to ensure gender issues are mainstreamed. The board’s functions include formulating policies, registering persons with disabilities, issuing adjustment orders, and providing assistive devices and other appliances and equipment.
Dr Njoroge notes that the children’s disabilities may be exacerbated by their contexts, notably their homes and local communities, such as schools.
For example, most will experience problems communicating and socializing with their parents, extended family, and other children.
Focusing only on the child in a clinical setting or through one-to-one teaching is less likely to help them become better communicators or more able to socialize with them in other places.
“A better approach is to center the support in real-life settings that engage other people interacting with the child. In a sense, the people with whom the children interact become recipients of the intervention, and through them, support is provided to the child to help them,” he says.
Most institutions and NGOs that work with special needs children rely heavily on external funds.
The external donors fund various aspects of interest only to those donors. As a result, these children’s integration into society cannot be achieved as expected.
Most official policies are mainly focused on children aged 0 to 6, thus leading to designated NGOs preferring to provide services for younger children instead of older special children.
According to Sister Mose, the lack of education options for adults with intellectual disabilities is also a significant blow to such institutions in the country.
She says that if both county and national governments collaboratively provide pre-vocational centers for adults with intellectual disabilities, this would provide a lifelong, equitable collegiate experience for adults with special needs who historically have not had access to higher education.
“Most of our students do have access to education until age 18. They cannot join higher institutions since most do not have special classes. So, at that point, if a young individual does not have skills, where they’re going to be able to access that accredited associate degree, then for the most part, their educational opportunities cease to exist,” she noted.
Sister Mose adds that the County Government of Kiambu has allowed the institution to replicate similar centers around the area, which include Thigio, Nderu, and Kiawanda. These centers host 45 special children.
She acknowledges success. The prevocational class of six students who began in the respite care class have become fully independent. The school has provided a baking class where the six bake and sell their products in the community.
However, evidence shows inconsistent policies of different agencies make the inclusion of these children difficult.
According to Teacher Njambi, success in special needs children cannot be measured through intellect. The child only moves to the next level if they have acquired the set learning areas, meaning a 16-year-old can still be in the foundation level.
She also notes that the main focus on the special child is categorized into four learning areas, which include respite care, foundation, intermediate, and prevocational levels. The main focus is on making the child independent.
She acknowledges that though several special needs children may not talk, walk, or become intellectuals, being in an institution enables them to become independent in their daily activities
