Patience, love and care; a couple's walk in parenting an autistic child

Therapists  Francine Asamba and Vivian Okuthe during language and speech therapy with an autistic child on July 15, 2021. [David Gichuru, Standard]

Raising a child with neurological and developmental disorders is not a walk in the park. Yet many won’t believe this except the ones who are living or have walked it.

Meet two dedicated parents, 35-year-old Sammy*, and Jane * who have been raising a child living with Autism Spectrum Disorder (ASD) for five years now.

They are residents of Juja, Kiambu County, who were happily engaged, but because Mother Nature sings her own kind of music that manifests in humanity’s tidings, the wife gave birth to their firstborn child safely without any complications.

Some years later, they would be blessed with another child, who didn’t have any health issues that they noticed.

“My wife gave birth to Teddy in 2019 and as a family, it was a blessing to have another child. He didn’t show any signs of sickness. A few months later, we noticed that he had regressed in his milestones. He first developed a challenge picking things up with his hands. He would also fall suddenly yet he had started learning to stand while supported by a table or chair,” Sammy recalls. By the time he turned one year, Teddy could no longer stand as he was too weak. His deteriorating speech aggravated matters further. His parents couldn’t understand what was ailing their secondborn child.

“We noticed something must be ailing Teddy and therefore, we took him to a health facility. Unfortunately, he was diagnosed with Autism Spectrum Disorder (ASD), which was like a big shock to us, but we didn’t have any option but to accept the situation,” he says.

According to Stephen Muga, an occupational therapist at the MP Shah Hospital, autism is a term that is used to describe a broad range of conditions relating to the development of the brain. It is characterised by challenges in social skills, communication, and restricted repetitive behaviours.

“Autism is a lifelong condition with no known cause. However, current studies point to the fact that a combination of genetic influence and environmental influences can cause an increase in autism. Although these studies are not conclusive and more research is going on to find the exact cause of autism,” Stephen explains.

“Signs of autism may vary from child to child. However, early signs of autism may appear by the age of one year. Most of these signs tend to be more obvious to parents when the children are between 2 to 3 years old. They include avoidance of eye contact, delayed language development, lack of speech or loss of previously acquired speech, unusual and intense reactions to sensory stimulus such as sounds, texture, lights, color, etc,” he adds.

The couple asked the medics what next after diagnosis.

“We were curious what was the solution because if someone has been diagnosed with a condition, the next is to get a solution. Medics told us that, ASD is not a disease but a condition that affects how people interact with others, communicate, learn, and behave. It doesn’t have a cure, exact causes are not known but it’s manageable,” Teddy’s father says. Whilst they were stressed after learning this, they were told to start therapy sessions early so that they could be in a position to manage it fully.

“In 2021, we started taking him to speech therapy in one of the hospitals in Nairobi but later dropped it when Covid-19 came in. We resumed in 2022 but changed to occupational therapy, after noticing he had already started uttering some words, pointing out colors, identifying items and shapes.”

In every hospital they visited, medics had the same message for Sammy and his wife: There is no treatment for the condition.

“We had already started a journey of managing this condition. This is one of the disorders you should be ready to dig deeper in your pockets now and again and of all the challenges we have been facing since Teddy was diagnosed to have is the expensive nature of management. Having a medical cover won’t help here, if you go for therapy sessions you need to pay cash and for my case, I spend Sh7,000 every week,” Sammy says.

According to Sammy, caring for, and raising a child with this condition can be challenging since you need to invest in special toys which are not cheap either. In terms of care, according to Teddy’s father, a parent always needs to be there for the child.

This is because the child can be overly aggressive and stubborn at times. People who don’t understand what they are battling may end up thinking that he or she is poorly raised which is not the case. Hence, Sammy and his wife believe that their second-born child will live a normal life like any other child, and their optimism is palpable.

“We call upon other parents/guardians/caregivers raising such a child or one with a related condition to open their eyes and be confident that tomorrow will be better. Let them understand that this is a condition, and managing it will be a solution and I bet your son or daughter will live a normal life.