How occupational therapy is helping my autistic sons thrive

Revelation that her first-born son had been born with a lifelong condition was devastating for Tabitha Njoroge.

Together with her husband,  Wilfred Kyengo Kimolo, the couple resisted the temptation to curse God for the ‘misfortune’ and struggled to come to terms with the reality that their child’s condition was not treatable.

At four years old, their son, Favor Kemal Kyengo was diagnosed with Autism Spectrum Disorder (ASD), a developmental disability caused by differences in the brain, also known as autism. “We prayed to God to at least shed light about the crime we both could have committed to deserve the turn of events,” she recounts.

Tabitha had nursed a dream of raising a healthy baby boy who would leave the homestead when he grows up to fend for himself at maturity. But at that very moment, that dream was shattered into pieces.

As if that was not enough shock, a few months later, their second born son Wisdom Fadhili Kyengo was also diagnosed with the same disorder.

Her consolation is that she is able to handle him much better. “I had experience from handling my first born,” says Tabitha who says children with deformity are a brilliant lot.

Unknown cause

Dr Kamau Kinya of Pumwani Maternity Hospital says there is no known cause or cure for ASD apart from speculation.

Most Africans relate the condition to being bewitched. Parental blame game for the cause has also been cited, says Dr Kinya.

“Affected children have delayed speech and lack communication skills, while social interaction is difficult,” he explains, adding, “They exhibit stereotype behaviours, such as tip toeing, spinning, blocking the ears and would smile continuously.”

Among other indications are tantrums, tempers and banging their heads on walls.

 He explains that a child with ASD is not able to receive information and interpret it correctly as it affects the area that connects two sides of the brain and the work of an occupational therapist is to engage the child in sensory integration therapy.

Behavioural problems

Tabitha remembers noticing that her children were not well when they could not engage in a basic conversation like their peers. “My first first born was barely four years old, but he could neither talk nor communicate properly,” recounts Tabitha.

She recalls being called by her child’s school one day and asked to go pick her child up because the teachers believed something was wrong with him.

“When I went to the school, I was told about my son’s erratic behaviour, especially towards others and why they could no longer have him. My body went numb and I failed to gather strength to leave. Authorities at the school removed him from class and handed him to me,” she narrates.

“The world came crushing down on me. Our relatives and friends speculated at the possibility of the child being bewitched. Some wanted to know if I had wronged anyone,” Tabitha adds.

She did not think there was anything wrong with her child despite indications of the child not being able to speak.

Her second born son Wisdom Fadhili Kyengo also faced the same fate of being sent away from school at three years old. His hyperactivity made teachers at the same school conclude that he had a problem. “The teachers said his behaviour ranged from biting, harassing other children and banging his head against walls,” she explains.

“He is now uttering words audibly, but still figuring out how to put together sentences,” she adds.

It is at Kenya Institute Special Education (KISE) that her fears about her children’s condition were confirmed. An occupational therapy specialist, Josephine Omondi introduced her to Kenyatta National Hospital (KNH) Department of Occupational Therapy in the Sensory Integration Therapy unit.

Quality life

Tabitha describes the hospitals’ Integration Therapy Unit, as one of the best in the country, but unknown to many.

At the unit, experts get into the world of the child and bring the child back to the normal world. Here, ASD and sensory processing disorders are managed.

Dr Kinya says individuals with autism have a dysfunctional sensory system referred to as sensory integration disorders, which occupational therapists manage by applying sensory integration frame of reference focus on how the sensory systems interact hence providing integrated information that contributes to a child’s learning and adaptive behaviours.

“Through sensory circuit, the right sensory diet is given and restored to the specific needs of clients, such as the sense to visit the toilet instead of soiling their clothes,” he explains.

The Grade Six pupil who spoke when he was three years and three months old, after undergoing therapy at KNH is now a top performer at his school, says the mother.

“When it was confirmed to me what was ailing my children, I knew it was time to act. There are many who are not aware of the help here at KNH. Occupational therapy is affordable, accessible and of high quality at the unit,” says Tabitha.

Dr Kinya reiterates the importance of occupational therapists in managing ASD and related conditions, saying they are faced with the responsibility of training their clients on eating, going to the toilets and grooming when they wake up. “In school, therapists come in handy as they train children and adults with ASD or related disorders on how to settle in class, as well as help them regulate sleep,” he explains.

Parents’ ignorance

He explains that occupational therapists bring back clients to reality and help them become proactive, assure their capabilities in life education for children and work for adults, how to interact with others socially in school, work place and community is critical.

“A child with ASD is not able to deal with daily stresses and education or learning is affected in the sense the child cannot concentrate on learning,” he says.

Deborah Mitei, an occupational therapist at Pumwani Maternity Hospital says most of the parents are ignorant about ASD.

“If not addressed by an occupational therapist early, it becomes more complicated in adult hood,” she cautions.

As a grown up, the child becomes dependent. They remain single and are introverts. They miss critical life skills, cannot manage finances, yet the cause is not known and cure is not available.

People just speculate.  Blame game between parents at times becomes a norm and accusing fingers are pointed at witch doctors,” says Mitei.