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Joys and tears of raising an autistic child

Having an autistic child can be tasking, financially, physically and emotionally. Ruth Tunai, who resides abroad, shares her experience on raising her autistic nine-year-old son in the US

Ruth Tenai delights in being a mother of four. Raising them in Florida, US, is even more exciting. It is, however, her nine-year-old son, Naphtali Attika, who has taught Ruth what being selfless really means. Naphtali, whom they call Buju, was diagnosed with autism when he was four years old making the journey of raising him peppered with tears and laughter.

Buju, who was born in the US, seemed physically fine until the age of four. His daycare teacher noticed that he would not socialise during recess. He would just sit in a corner and do his things. Even during meals, Buju would pick red cereals over other colours. It was the little things that caught Buju’s teacher’s attention and by proxy, his mother’s.

The revelation

Buju had started baby words at about two years, but after four years, he was still not talking. That was when Ruth took him for definitive diagnosis. Ruth took Buju to Kennedy Krieger hospital,  Baltimore, where they specialise with autistic children and have parents stay there when they tend to their children.

Buju was diagnosed with autism. “It was not easy because I didn’t know anything about autism. So, I thought it was good he had been diagnosed and now he was going to be okay— that there was a cure.

I went to the library, which was downstairs of the hospital. I found the shocking revelation that there was no cure. I was devastated,” recounts Ruth.

She stayed at the hospital with Buju for a month. However, Ruth went back after six months because Buju was not eating. He was only eating crisps, milk and anything dry. Never real food.

“To feed Buju at the hospital, they would sneak behind him in a room and suddenly put whatever food they had in his mouth, that way, they would awaken his sensory. This helped a great deal with feeding. We stayed for another month in hospital,” she adds.

When they went back to Baltimore, there was not enough therapy so the family relocated to Florida. There, they found a university where they tend to children with autism called Centre of Autism and Related Disorders (Card).

At the age of five, Buju was enrolled to a regular school, which had a stream for autistic children where he still is up to the moment. “There are only seven students in class and are given special care by three or more teachers.

For after school therapy, I’m not charged. The US government looks at how much you earn and gives free therapy for parents who can’t afford it consistently,” Ruth reveals.

Ruth’s biggest challenge is that now at nine, Buju is still non- verbal and so communication can be hard at times.

Raising awareness

When Buju is unwell, for instance, it takes a while before Ruth can know for sure. Although now Buju’s routine is extremely orderly, he still needs to be under strict supervision all the time.

Ruth admits that she at times needs to take time off in order to keep her sanity. Her other children who are all in school, but also work, have a wonderful relationship with their younger brother. Every Friday after work, they look after Buju and allow their mother to go for a walk or to the movies to unwind. Her husband has also been supportive.

To raise awareness on autism, Ruth set up a foundation called Step Up For Autism in 2016. The foundation that started as Facebook page, is now helping mothers with autistic children in Mathare. The foundation is run by volunteers and they recently held a beauty pageant dubbed Miss Autism Kenya at Kasarani Sports View Hotel.

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