My daughter who has Asperger Syndrome is a miracle

Irene Kigathi (right), has started an organisation to help children with special needs, based on her experience raising her daughter, Edith.

By Kiundu Waweru

Unlike most other mothers, Irene Kigathi’s misery did not end with the labour pains. She had been in agony for two days when her bundle of joy arrived, and the then 27-year-old sighed in relief. But the happiness did not last long.

Baby Edith was always coming down with something; if not a relentless cold, it would be bronchitis, or pneumonia.

“She was quiet a baby, and though she seemed to achieve the milestones on time, she was constantly ill,” says Irene.

At the age of five, Edith had been diagnosed with asthma. And she did not speak until she was seven years old, by which time she had been operated on to remove adenoids, a mass of tissue at the back of the nose and the throat that restricts breathing if enlarged.

Edith’s first word was ‘mama’. But at that time, her mama was going through hell. When Edith was just a year old, her unexplained condition, which saw the young couple in and out of hospital, strained her parents’ relationship.

“Her father walked out on us,” Irene recalls.

By then, Irene was working in Nairobi and she left her child under the care of her mother in Limuru.

She remembers one incident that will forever be ingrained in her mind: She had just had her hair done beautifully in a city salon, when she was told Edith had been taken ill, again.

She rushed to the hospital where the baby had been admitted, but received a cold reception.

“When I arrived, the nurses derided and abused me; they looked at my hair and said I was beautifying myself when my daughter was suffering. They accused me of neglect. I was so hurt that I felt like pulling off the hair.”

After Edith turned three, Irene enrolled her at a neighbourhood school. The little girl found it hard to keep up with her classmates.

At the age of five, her father mercifully came back home. By then, the family had realised that Edith needed special attention, so they enrolled her at a regular school with a special unit. She could not cope there either.

Distraught

At one point, Edith refused to attend school. They took her to other private special schools, most charging about Sh40,000 in fees, which was not only a lot of money in the late 1990s, but also hard to come by for the family.

Miraculously, when Edith was 10, she found a place she loved; the Kenya Community Centre for Learning (KCCL), which had been started in 2001 to cater for children with learning difficulties.

Edith would study at KCCL until the age of 15. She will celebrate her eighteenth birthday in October.

But the same year she was enrolling at KCCL, in 2005, Edith underwent a harrowing experience that left Irene distraught, and banished by her in-laws.

“We were having a function at my in-laws’ home. My husband had travelled out of town, and when he got home, he was met by a crowd baying for a man’s blood. The man had been caught red-handed raping a girl.” She pauses. “The girl was our daughter, Edith. The culprit was my husband’s close relative.”

The man was arrested but escaped from remand. The in-laws urged Irene to drop the case, but she refused, and a cold relationship ensued.

“It has been an uphill journey,” she says on the verge of tears. “It was in 2004 that we learnt Edith had Asperger Syndrome (AS). She was then nine, and we had visited countless hospitals, spent lots of money in private schools but her condition did not improve.”

Asperger Syndrome is an autism spectrum disorder characterised by difficulties in social communication and nonverbal communication. People with the condition are also said to lack empathy and be physically clumsy.

However, if discovered at a young age and addressed, with one of the interventions being behavioural therapy, these children grow up as normal as possible. In fact, people with AS are gifted, and they exhibit intense interest in particular subjects, mostly the arts.

Hidden

But then, Irene says, many parents give up on their children. Some disown them; others ‘hide’ them in their houses, where they never see other people, or sunshine.

Aware of this, Irene started Tuleane Afrika Initiative, which assists children with learning disabilities, last year. Tuleane works with the Special Unit Department of the City Council schools, to offer the children practical skills in the arts, such as beadwork.

We caught up with her at the Riruta HGM Primary School, where the Special Unit, headed by Rehab Gichohi, has about 15 children but is ill-equipped.

Also, seeing as it is an integrated school, the other pupils chide the children in the Unit, and tend to refer to them as having mental illness.

“This is not the case. Most of the children are dyslexic or autistic, and others have cerebral palsy,” says Rehab.

Irene adds that getting some of the parents to care for their children is a challenge. There are those who take their children to school, not to empower them, but as ‘good riddance’.

“We have seen some improvements, though it is still tough getting parents to bring their children to us,” Irene says.

But she is still grateful for having come this far.

“It is a miracle that my daughter is turning 18. She has learnt basic skills though she remains at home as there are no exit programmes for children with special needs after basic learning. I know most parents cannot afford special schools, and Tuleane is hoping to fill the void,” she concludes.