In Summary
  • Obtaining a diagnosis was a relief because it enabled Kerubo and her husband start studying and making effort to find out as much as she could about the condition, and make adjustments to their lives to accommodate their daughter’s disorder.
  • “It is not a disease, so it is not something you treat. You just manage it,” she interjects.
  • Do you have feedback on this story? Please e-mail: [email protected]

Nancy Kerubo’s daughter, Natasha, called her mummy for the first time at eight years old. Natasha started eating hard foods at five. It was the same age that she stopped using diapers.

“Thankfully, after the many years of trying we were able to potty-train and she can finally go to the toilet by herself,” adds Kerubo, who had Natasha when she was 19.

It’s a journey that no one saw coming. As a toddler, Natasha Wangari had communication difficulties but it wasn’t well understood how things would go until she was much older. With age, she exhibited other odd behaviour such as withdrawal, obsession with sameness or fury at disruptions. 

“You can’t tell that there is anything wrong just by looking at her but once you relate with her, you start to realise she is not your typical nine-year old.”

NO MILESTONES

Natasha was one year and three months old when the parents started noticing something was amiss. She hit none of the milestones kids her age had.

Concerned, her parents sought a doctor’s intervention but upon examination, the baby was given a clean bill of health.

The doctor recommended a CT scan to check if the brain was fine. It was, and this threw the first-time parents into even more panic as they were still certain something was terribly wrong. It was not until the head teacher at the first school they enrolled her in Kahawa Wendani,-also concerned on noticing Natasha’s limited social skills and how she just sat alone while other kids played together-suggested that she sees an ENT specialist that they really got to confirm a fear Kerubo had had for some time.

THOUGHT SHE HAD A HEARING PROBLEM

“You know, with autistic children, you might easily assume they are deaf because when you call them they will normally not respond. Plus she was still not talking properly at three and half years. So we thought for sure it was a problem with her hearing,” she recalls.

After assessment, the ENT specialist confirmed Natasha’s hearing was okay.

But nothing could have prepared the mother for the heartbreaking news that came shortly after that.

After having a 30-min play session with Natasha, the doctor sat her down.

“She asked if I knew about autism. I was taken aback, even though by this time, I had started searching the internet for a possible explanation to her developmental delays and one of the results to have come up had been autism. I think I was just in denial.”

Her mother recalled that when she wanted to communicate, Natasha would flap her hands. The behaviour, a repetition of physical movements and soundscommon with autistic people because they can’t speak is called stimming. She would also tip toe.

RELEIVED

Autism is a poorly-understood neurological disorder that manifests as an inability of an individual to engage in various social interactions.

Obtaining a diagnosis was a relief because it enabled Kerubo and her husband start studying and making effort to find out as much as she could about the condition, and make adjustments to their lives to accommodate their daughter’s disorder.

“It is not a disease, so it is not something you treat. You just manage it,” she interjects.

She is yet to do speech therapy. Her mother says finding a speech therapist in Kenya has proven to be a tough ordeal and the few in the country are very expensive.

For Natasha, linguistic ability is a skill best learnt from song lyrics.

LOVES LISTENING TO MUSIC

“Listening to music is her favourite pastime. And having once heard a song she will never forget it, and will even go on the website to search for music trivia on it. Just so she can understand it further,” says Kerubo.

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