How my autistic son changed me

Jacinta Mathenge looks at her 14-year-old son, Victor Mwangi, and breaks into a smile. But behind that broad smile is an 11-year journey she has walked with her him since she learnt that he was dignosed with autism.

“The experience has changed me,” says the 52-year-old mother of three. “I have learnt to be patient, to love more, and not to compare Victor with any other child. He is a special gift from God,” she says.

As a toddler, Victor seemed like any other child. But his mother realised that something was wrong when, at the age of three, he could not understand simple instructions.

“For instance, he could not give me a cup or spoon placed before him when I asked him to,” says Ms Mathenge.

He was also hyperactive and always running around the house. She could not figure out what the problem was, “but I noted that there was a big difference between him and Triza, his elder sister,” she offers.                                                                             

It was not until she enrolled Victor for preschool at a private institution in Embu, where they were living at the time, that his teacher alerted her to the problem. That was in 2005, and Victor was in Baby Class.

 “I had gone to pick him up from school one afternoon and his teacher told me, “Your child cannot hear,” Ms Mathenge recalls.

This got her concerned, but she still could not relate Victor’s lack of attention to her simple simple instructions at home to what the teacher had told her. So she took him to paediatric clinic in Nairobi for a hearing test, hoping the diagnosis would help point the way forward.

“But the doctor said that Victor could hear – even a fly,” Ms Mathenge recalls.

OSHAWAL PROGRAM

This saw Victor, who is now student at Oshwal Academy Nairobi Primary’s Inclusive Education Department (IED), referred to the Kenyatta National Hospital (KNH), where doctors confirmed that he was suffering from autism.

Autism is a spectrum disorder characterised by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviour, says Mercy Njeri Muchiri, a special-needs teacher at Oshwal Academy Primary School in Westlands, Nairobi.

Following the diagnosis, Victor was booked for a monthly clinic at the Kenyatta National Hospital , where doctors said that he would outgrow the condition. But that did not happen, Ms Mathenge says.

In 2008, she enrolled Victor in a school in Limuru that admitted children with autism. In the meantime, some relatives told her of a good doctor in the US who could manage autism well. This saw Ms Mathenge and her son leave the country in December 2009 in for consultation with the doctor.

“We stayed in North Carolina for a year while Victor underwent speech and occupational therapy and attended pre-school,” she says.

They returned home in December 2010, with Victor’s condition considerably improved. “He was less hyperactive; the running around had reduced,” says Ms Mathenge.

She immediately enrolled him at Kasarani Primary School, Nairobi, which has an autism unit, but moved him to the Oshwal Academy Nairobi Primary in 2011.

“I was referred to the school by another parent. She told me that Victor might benefit from the Oshwal programme. Though I had become weary of changing schools, I decided to give it a try,” Ms Mathenge explains.

This is Victor’s sixth year at Oshwal Academy, and he is showing progress, she says.

“He has acquired some life skills; he can now take a bath, dress himself, and go to the toilet unassisted. These are things he could not do on his own before,” Ms Mathenge points out.

She is optimistic that her son is on the road to an independent life.

“Although I cannot leave him at home alone at the moment, we are getting there,” she says.

Victor loves the outdoors, so during his free time he goes swimming, rides his bicycle or plays football with boys in their neighbourhood.

But he is yet to develop full speech and uses alternative techniques to communicate. “For instance, when he wants something, he pulls me to where it is. And at the supermarket, he  picks what he wants,” Ms Mathenge offers.

Victor’s condition comes with other challenges too. Sometimes he gets very hyperactive. “I might be walking with him on the street when he suddenly pulls away and runs, so I have to call out to people to restrain him. Sometimes onlookers do understand that  he is a child with special needs,” Ms Mathenge says.

Ms Mathenge has always had to hire a helper to look after her son, but most of them leave after about a week. “They cannot cope with his hyperactivity,” she explains.

However, her husband and family have been very supportive. “My husband adjusts his schedule so that he can take care of Victor and spend time with him whenever I am busy,” says the businesswoman.

LEARNING PATIENCE

She says the programme at Oshwal Academy Primary is no different from the one used in the American school Victor attended.

 “The staff don’t hesitate to point out any problem with your child. They also show you how to handle it at home. At the end of the day, the parent, child and teacher walk together,” Ms Mathenge says.

And as is often the case with other special-needs education, Ms Mathenge says that it is expensive to manage a child with autism. The care and education are quite costly. This, she adds, is an issue that the government should address.

 “Most of the affected parents cannot afford the cost of private special education,” She points out.

A look around the country shows that only a handful of government schools have integrated special-needs education. And of these, only a few have special-needs education teachers.

One of the most important lessons Ms Mathenge has learnt from living with Victor is patience. “Victor does not acquire skills instantly. Sometimes, I have to repeat the same thing every day for a month for him to understand and apply,” she says.

With time, she has learnt to be persistent and consistent when teaching him life skills. “It is a continuous learning process, and this has also changed me as a person. I am calmer, I now listen more, and give him more time to learn,” Mathenge offers.

She has also learnt the importance of early intervention, and says it important that the child start with speech and occupational therapy before they outgrow the programme. In addition, she now knows that special-needs children should be put on a diet that reduces on their hyperactivity.

Consequently, Victor will forever be on a gluten-free, no-sugar and no-milk diet. This means that his diet excludes wheat products and soft drinks. But he can take camel milk and small quantities of soy milk.

Ms Mathenge’s biggest goal?

“I want Victor to gain independence. From speech, to reading and writing, to discovering his talents and  gaining life skills. That way he will be able to lead a near-normal life. I am doing my part wholly as I leave everything else to God.”

Multisensory approach to learning for au children with autism

In a conventional classroom, children with autism will appear less intelligent in academics. This is because they have problems with sensory processing, and this affects the way in which their brains process information, says Ms Muchiri. This, in turn, affects their speech and language skills. As a result, they cannot learn to read and write as easily as other children.

To overcome these  challenges, teachers have to use a multi-sensory approach. This is where the teacher works alongside an occupational therapist in order to control the learner’s state of mind to enable the teacher to instruct  them when they are at their best, explains Benson Mutiku, the strategic leader at the Inclusive Education Department (IED) at Oshwal Primary School.

STIMULATING THE SENSES

The school has invested in a sensory integration room where the learners undergo occupational therapy in order to organise their senses of touch, movement and smell, among others. Its state – from the lighting, its overall feel and ambience, is controlled.

“We have to keep it in a state that allows learners to re-activate their visual perception and for sensory stimulation,” says Mathew Mwangi, the occupational therapist.

For instance, the room has a suspended cluster of fibre-optic wiring, which keeps changing colour. This stimulates a learner’s brain to localise and integrate the different colours. There is a big trampoline ball that the learners use in order to help keep their body and dynamic balance as they move. A big screen features bubbles of colours that keep on moving. This activates the visual system, which helps learners to follow reading in class.

Various plastic balls of different colours and textures help to restore the learners’ sensory cord by way of reinforcing their tactile system. These helps them to acquire both grip and motor skills.

Sounds of nature – birds singing, flowing water, and swaying of trees keep playing. This helps to isolate the learners from what is happening outside and to keep their attention, Mr Mwangi says.

All these, the occupational therapist explains, work together to calm down the learners, making it possible for their teachers to work with them much better in class.

“Once the hyperactivity slows down, learners get into a state in which it is easy for them to remain in class longer, be more attentive, listen better and follow reading,” shares Muchiri.

To increase the learners’ attentiveness, Ms Muchiri keeps a schedule for routine of activities. She starts her day with the learners with creeping and crawling activities. This, she says, is an interactive method that stimulates all the four parts of the brain. The learners then move on to English, mathematics and science subjects before transiting to vocational lessons – computer studies, music, art – and life skills training in the afternoon.

She also communicates in short, simple sentences and pays attention to every child’s needs. “If a child does not like certain sounds,  or certain colours, I have to factor that in when teaching,” she notes. She also rewards her learners. “I reward them there and then,” she adds.

Ms Muchiri uses various methods to assess the level of her learners’ autism to treat them accordingly. “For mild autism, I administer exams. In severe cases, I do periodic observation using life skills,” she explains.

This multi-sensory approach has worked as a learning intervention in children with autism. “One of our former students is now studying at the University of Nottingham. We have another at the Kenya College of Accountancy University pursuing a Bachelor of Commerce degree in accounts, while another one is a waiter at Kentucky Fried Chicken in London,” Mr Mutiku says with  pride.

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FYI

Facts about autism in Kenya 

Autism is a lifelong developmental disorder that impairs the part of the brain that controls a person’s social communication, interaction and imagination. Typically, it appears during the first three years of a child’s life and affects more boys than girls (by a ratio of 4:1).

Autism has no known cause or cure, but has a number of management interventions that may help affected children lead near-normal lives.

The early warning signs of the condition include:

•  Lack of, or delay in, spoken language

•  Little or no eye contact

•  Repetitive use of language and/or motor mannerisms. For example hand flapping and twirling objects

•  Lack of interest in social interactions.

•  Persistent fixation on parts of objects.

Prevalence

1. World Health Organisaation estimates indicate that the disorder affects 800,000 people in Kenya today, meaning one out of every 68 people.

2. Where to get help

3. According to the Kenya Institute of Special Education, there are 97 schools spread across the country that have dedicated units for children with autism. They include:

4. Oshwal Academy Primary School in Westlands, City Primary School in Ngara, Kasarani Primary School, Kestrel Manor School in Parklands, the Kenya Community Centre for Learning (KCCL) on Thika Road, and Gibson’s School in  Karen –  all in Nairobi.

5. Others are Barut Primary School in Nakuru, Moguini Primary School in Thika, Embu School for Special Needs and Abbey International Special Needs School in Kikuyu.