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A mother’s lessons from raising a child with autism

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Fred Sembatya, a teacher for children with special needs at Teens and Tots Neuro Development Centre, goes through a learning session with four-year-old Sean Kayongo.Photo by Edgar Batte 

By Edgar R. Batte

Posted  Monday, December 16  2013 at  02:00

In Summary

Raising a child with a development disorder can be challenging. It takes a lot of patience, endurance, and time to do so. In this feature, a mother shares her experience and the lessons she learnt through taking care of a child who has autism.

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For a moment, Sarah Kisitu was not sure what to think. Her son was always hyper but non-verbal. He had been interactive before, but after two-and-a half years, he lost the few words he could speak.

“I could not even hug him. He was always shouting and screaming. I could watch him go to a corner and scream. That is how he got relief. He would flap his fingers. It really destroyed me. He was in his own world,” Kisitu recounts.
She was getting various opinions and advice from people on what could have gone wrong with her son, with some people suggesting he could have been bewitched.
“They explained that my son was bewitched and that is why he jumps with his shadow,”says Kisitu.
From then on, the mother-son relationship was destroyed because Kisitu could not get close to her son.

Getting no answers
Even her search for answers turned out to be frustrating.
“The first paediatrician I consulted said my son had a hearing problem. I then went to a doctor and I was told to go and have his ears checked.

“I went to Nsambya Hospital, but they could not help me. I was referred to Abby Clinic Wandegeya, where I met a doctor called Chris who said because my son was hyper, he had to first be sedated so that they could examine his ears and try to establish the problem, Kisitu explains.

She adds: “I went to Kampala Hospital and my son was taken to the theatre. The doctors told me he could not hear. But back home, my house help said whenever my son heard an advert on TV that he liked, he would come running to watch it.”
The doctor advised Kisitu to buy hearing aids for her son instead, and enrol him in a school for speech therapy
She went to Bible House in Wandegeya where the hearing aids were being sold at Shs5.4m.

“I got second thoughts about spending all that money. I returned home and researched more on autism and found out that a person with the condition develops selective hearing, and takes long to digest sound,” Kisitu explains.
As her search for answers continued, a friend referred Kisitu to a neurologist.

“The neurologist diagnosed and confirmed that my son was autistic. His memory had started to regress and he had forgotten all that he had learnt. The doctor recommended I give him medication that would calm him if I wanted peace in the home since I was pregnant at the time,” she recalls.
When the medication was administered however, it only made Kisitu’s son weaker.

“He was in a mess. He would go to the corner and sleep like a person going to die. I called the doctor and he told me to follow the instructions I had been given. When I inquired more, I was told the medication was not meant for autistic children since they do not need any medication,” Kisitu explains.
The next trip was to Mulago National Referral Hospital where Kisitu sought to have her son’s brain examined and find out what was affecting his speech.

About the same period, a neighbour threw a birthday party for her son and invited fellow neighbours’ children. It is during this interaction that Kisitu learnt that her neighbour too had an autistic son.

They talked and the neighbour connected her to the school that her autistic child was attending.
It is during this period that she met Fred Sembatya, a special needs children teacher, who is also a speech and language therapist.

Sembatya also has a Master Degree in Autism from University of Southwales, UK. As a first step, Sembatya advised that Kisitu’s son be taken off milk and sugar. Kisitu says after two weeks, her son calmed down and she noticed a big difference. But he was already of school-going age.

“I realised there were no schools that take care of autistic children apart from Tunaweza, which had just started. Another school that I searched through the web was in Gulu. I was confused and since I was pregnant at the time, I almost had a miscarriage. So I decided to first give it a break as I continued to ask around,” she adds.

“Sembatya told me to bring the child for assessment. After undergoing examining, he told me it was okay for my son to act that way,” says Kisitu. Sembatya suggested that we start our own centre to cater for such children since there were several things they were missing at the school at which Sembatya was tutoring.

It is then that Kisitu decided to start a similar school, first with only her son. Today, the school has 21 children. Kisitu says it is different from the usual schools because they do not follow normal schedules, but rather specific programmes for every individual child.

Expert take
Sembatya says most of the children he handles have autism spectrum disorder. He says: “Autism is a development disorder. Currently, we do not know the exact cause or its cure. So what we do in practice is work on the symptoms that are behavioural. We also work on the sensory processing difficulties, difficulty in communication and feeding.”

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