My journey: Raising a child with autism - Daily Nation

My daughter is differently abled

Monday April 23 2018

Feruzi Charter School founder Nancy Kerubo and her daughter Natasha Wangari at the school in Nairobi.

Feruzi Charter School founder Nancy Kerubo and her daughter Natasha Wangari at the school in Nairobi on June 17, 2017. PHOTO | CHRIS OMOLLO 

By PAULINE KAIRU
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Ms Nancy Kerubo says she first suspected something was wrong with her daughter Natasha Wangari when, at the age of 15 months, she could not babble like a typical toddler.

“That worried me, because I had a friend whose child was Natasha’s age-mate. Her baby was doing certain things that mine wasn’t,” recalls Kerubo.

MEDICAL TESTS

So she and her husband sought medical attention for her. But upon examination, Natasha was given a clean bill of health.

The doctor said she wasn’t sick, but recommended a CT scan to see whether her brain was fine. The results showed no abnormality.

Ms Kerubo and her husband, then first-time parents, were perplexed. They had a feeling that something was wrong.

But it was not until the head teacher at her first school in Kahawa Wendani, also concerned after noticing Natasha’s limited social skills and failure to interact with other children, suggested that they take her to an ENT specialist, that they confirmed a fear Ms Kerubo had been harbouring for some time.

“You know, you can easily assume that an autistic child is deaf because when you call them, they normally don’t respond. Besides, she was still not talking properly at three-and-half years. So we thought she had a hearing problem,” she recalls.

But a visit to an ENT specialist confirmed that Natasha could hear.

Natasha Wangari plays at the swings at Feruzi Charter School in Nairobi.

Natasha Wangari plays at the swings at Feruzi Charter School in Nairobi. PHOTO | CHRIS OMOLLO

AUTISM

Still, after playing with Natasha for 30 minutes, the doctor sat Ms Kerubo down.

“She asked whether I knew about autism,” she recalls, “I was taken aback, even though I had started searching the Internet for a possible explanation to her developmental delays and one of the results that had come up was autism. I think I was just in denial.”

When she wanted to communicate, Natasha would flap her hands. This behaviour, a repetition of physical movements and sounds common among autistic people, is called stimming. She would also walk on her toes.

The diagnosis was a relief because it enabled Ms Kerubo and her husband to find out more about the condition and also adjust their lives to accommodate their daughter’s needs.

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

“People associate disability with the blind, deaf, or physically disabled. But even these guys, can’t really handle themselves a hundred per cent like the rest of us.

“For instance, I wouldn’t leave Natasha to cross the road alone because I know she can’t do it by herself while children her age can do that by themselves,” Ms Kerubo adds.

THE JOURNEY

Natasha, who started eating solid foods at the age of five and called Ms Kerubo “mummy” when she was eight, still has problems communicating. A conversation with her can be unpredictable – she is loud and repetitive. 

“Pauline! Pauline! Pauline!” she repeats in a high-pitched voice when I offer my hand and introduce myself. Then I ask what her name is and she says, “Pauline.”

There is something obviously different about her eye contact, which Ms Kerubo is quick to explain as one of the receptive language issues they are trying to deal with.

She is yet to undergo therapy. Ms Kerubo says that finding a speech therapist in Kenya is difficult, and the few available are very expensive. 

LOVE FOR MUSIC

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

“Listening to music is her favourite pastime. And once she hears a song, she never forgets it, and will even search for trivia on it on the Internet,” says Ms Kerubo.

At some point during our visit, Natasha retreats to the curb on the driveway to listen to a song on her instructor’s phone. She is absorbed in the song, with her face just inches from the screen.

Natasha Wangari plays the piano.

Natasha Wangari plays the piano. PHOTO | CHRIS OMOLLO

Ms Kerubo explains that she gets totally immersed in whatever activity she engages, adding that those around Natasha realised that she was intrigued by music and rhythm at a very young age, and seemed to have an especially remarkable ability to memorise songs.

“She repeats a song over and over flawlessly from start to finish after hearing it once,” Ms Kerubo offers.

“She tries to pronounce words the way she hears them in songs. So her teacher is letting her listen to songs on YouTube with the lyrics. She tries to sing along to the words,” says Natasha’s therapist, Aileen Mukiri.

And so along with therapy, her parents have introduced her to music.

“We are encouraging her to play the piano in line with this love for music. But we are trying other things as well,” offers Ms Kerubo.

“My Internet research told me that autistic individuals, if supported, do very well,” says Ms Kerubo. 

It is with this awareness that Natasha’s family decided to support her musical interest.

SIMPLE GOALS

“Natasha is sharp,” Ms Kerubo remarks at some point. “With good therapy, kids like her can do anything. Natasha is also an excellent swimmer.”

As a way of reinforcing this gift, her parents have bought her a piano and started her on lessons.

Her skills have improved since she started playing at her former school, Kaizora, a school in Karen for kids with special needs. 

Ms Kerubo says she sets simple goals for Natasha when imparting new life skills.

“We have learnt not to make plans for her, but to accompany her progress instead of mapping out her life,” she says.

She thinks of her daughter as “differently abled” and doesn’t like her being called disabled.

Ms Kerubo says Natasha’s younger siblings, a set of twins, have helped her developmental milestones.

“I was worried when I gave birth to my second-borns because I thought she would bully them. But she has been very good with them. If she finds them doing anything she doesn’t approve of, she brings  them to me,” she says, “The twins have helped her in terms of developing her social skills because of their interaction.”

Ms Kerubo believes that support and open-mindedness are the ultimate contributions those around autistic people can give them.

For instance, when Natasha gets troublesome for being held for the photo shoot we have to do for the story, Ms Kerubo says, “She’s probably tired. She has been having her pictures taken since early afternoon. She doesn’t take interruptions too kindly. She is intolerant of people interfering with her personal space and gets frustrated like this when her routine is interrupted for too long.”

Feruzi Charter School founder Nancy Kerubo.

Feruzi Charter School founder Nancy Kerubo talks about autism, her daughter and starting a school for special needs children. PHOTO | CHRIS OMOLLO

TALKING OPENLY

“I talk openly about Natasha’s condition wherever I go with her…to improve people’s understanding of her behaviour. You can imagine being with her and then she flings herself to the ground.

People often give her an odd look when she throws a tantrum. Sometimes I, too, get disapproving looks since people wonder why I can’t control her.

“I always make an effort to explain and people are usually very understanding. Talking openly about it has helped me accept it further. I feel this also helps create awareness,” she says.

But it took a while to get to this point. There are times when she would just pick her daughter up and retreat to the comfort of their house after sensing rejection from others.

“I tried to help her by taking her outside to play with her age-mates to see if her social skills would develop…but then I realised that every time I took her to a group of kids, their parents would come and pick them up one by one, as if she wasn’t supposed to be there. It really demoralised me,” she recalls.

Natasha, now 10, might have some trouble writing full sentences, but she is good in maths.

Ms Kerubo says she and her husband have had to put up with all sorts of negative comments, including from close relatives.

“This isn’t from our side of the family…you need to visit a certain witchdoctor. But my hubby and I stood by each other through it all,” she reveals.

“Today, as a family, we have fully accepted Natasha and do what we can to improve her life. And because we realise what a struggle it is finding support and institutions that are suitable for kids like her, in April 2017, we started Feruzi Charter School,” she says.

Natasha Wangari, instructor Aileen Mukiri and Feruzi Charter School founder Nancy Kerubo at the school.

Natasha Wangari, instructor Aileen Mukiri and Feruzi Charter School founder Nancy Kerubo at the school. PHOTO | CHRIS OMOLLO

SCHOOL

Based in Lang’ata, the school offers the British curriculum together with applied behaviour analysis (ABA). It admits 40 children.

The ABA therapy is the use of special techniques and principles to bring about meaningful and positive behavioural change in young children with autism and related disorders.

“You know, these special kids need one-on-one intervention so we can’t handle more than 12 in a class,” Ms Kerubo offers.

The school charges between Sh150,000 and Sh200,000, depending on the number of therapies the child is undergoing.

She explains the high fees: “For me to practise, I must be supervised by a BCBA (board certified behaviour analyst), and I cannot find one in Kenya, so I have to outsource from the US. We skype, followed by regular visits. It is an expensive venture. But it is worth it.”

“There are few schools dealing specifically with this condition, and that is my worry because we are not helping these kids develop their full potential,” she notes.

The ones that are there are beyond the means of many families. For instance, Kaizora charges Sh300,000 per term.

It is the desire to make learning more affordable that prompted them to start a school for autistic kids.

The search for a school that would accommodate Natasha’s special need became an important aspect of her parents’ lives. They took her to Kestrel Manor School in Westlands, then to Kaizora, which proved too expensive.

“That is why I thought, why not have another school offering ABA in Kenya if it can help other kids who can’t afford a very expensive school?” offers Ms Kerubo.

 

DIFFERENTLY ABLED INDIVIDUALS

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

According to Dr Darold Treffert, a Wisconsin, US, psychiatrist who has studied autistic individuals since 1962 and is a worldwide authority on the subject, many people with autism are highly talented.

Their skills typically occur in five general areas: music, art, calendar calculating, mathematics and mechanical/visual-spatial skills. Some are multitalented.

About one in a hundred children develop autism spectrum disorder (ASD) and of those, about one in 10 have a talent that sharply contrasts their level of functioning.

Their skills tend to fall within a narrow range of subjects, notably art, music and maths. Most are referred to as “splinter savants” – those with a very specific skill, such as the ability to memorise maps, historical facts or sports trivia.

A few are “talented savants”, with an outstanding expertise in playing a musical instrument, or say, painting. There is even an art gallery dedicated to their work. The exhibition is called Don’t Dis The Ability.

About 100 savants of those he has been able to follow in the world are classed as “prodigious savants”, so talented their skills would ordinarily be considered to be at prodigy or genius level.

And, just as with the other savants, family encouragement, unconditional love, patience and belief are vital ingredients to the growth and progress of these extraordinary people, says Dr Treffert.

He credits this to their excellent attention to detail and extreme memory, especially in contrast with non-impaired individuals.

“The power of love, faith, patience, belief, pride and optimism in the families of these special persons who not only care for them, but care about them as well. They are stories of acceptance and inclusion and minimising disabilities and celebrating abilities,” he says in various reports.

In fact, he tries to expunge the perception of autism as being an impairment, while the strengths, such as the ability to systemise or to pay close attention to detail, are often overlooked.

“Autistic individuals have extraordinary ability that stands in stark contrast to their overall handicap,” he says.

ASD occurs in all racial, ethnic, and socio-economic groups, but are almost five times more common among boys than among girls.

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