Touched by an angel

By Seneiya Kamotho

"I was already a mother of three other beautiful girls," says Nereas Hirst slowly, "so to this day, I wonder why I didn’t notice anything."

Muthoni knits a scarf at school. She can also cook, clean, sing, dance, play sports and speaks three languages. She hopes to get married and have children.

on the teachers’ attention and time already so high that the child with DS may not get the required special assistance to keep up or cope.

Laughed at and teased

"DS children may have slurred speech or struggle with pronunciation because of their poor muscle tone, and many times the other children who don’t understand these difficulties may laugh at and tease them for it," says Florence Kumenda, a teacher at Circle Academy, a school for children with special needs.

DS children may also have eye and ear problems making it difficult for them to see or hear clearly. A teacher trained in special education would place such a child closer to the board.

Nereas and her husband Terry finally decided to start their own special school for DS children in their backyard. This ensured that Muthoni did not get teased too much for having DS, and also cut down on the exorbitant cost of taking her to a special school. Nereas was also able to teach vocational and life-skills as well as academics at a rate that Muthoni could cope with, in an atmosphere where people loved and understood her.

"Before I knew it, I was teaching nine pupils because other parents with challenged children heard what I was doing and sent their children here. It was a bit overwhelming at first, but I felt more in control of Muthoni’s development as a mother."

Muthoni’s parents had been told that she would only be able to speak one language because of DS, but today Muthoni speaks three languages (Kiswahili, English and Kikuyu), plays the piano (she even played a few pieces at the public launch of the Down Syndrome Society of Kenya in 2004), cooks, cleans, sings, dances and plays sports without much difficulty. A lot more time is taken in teaching self-care skills such as feeding, dressing and grooming.

"We are now focusing on teaching Muthoni the skills she would need to live on her own. It is important for her to be able to protect herself and live with dignity, just as any other woman over 20," says Nereas.

When the Sunday Magazine team visited the Hirsts at their home, Muthoni came out to greet and usher us in with twinkling eyes and a bright smile. She served us a hot cup of tea and a plate of chopped sweet melon. She chatted easily and, although at first I struggled to understand her, I soon got used to her pace of speaking and found she was quite fluent and had a fabulous sense of humour. She showed me her photo album that revealed a full life of her tending to chickens, puppies and cats as well as enjoying life with her friends and family.

Strain a marriage

"I can now read easily and write up to number 10,000 without a problem, so I am going to start working in an office in town this month doing all the filing and typing. I have just learnt how to type!" she says excitedly.

A disabled child can strain a marriage especially if the couple is not properly informed on the child’s situation, especially if relatives and friends are not supportive. Many couples even break up over a child with disability and, usually, the woman is blamed for any anomalies.

"Terry and I had to stick together. We believed that Muthoni would make it. We take all our children out often for social outings. They have learnt to help each other and the love between them as siblings is important for making Muthoni feel she is just as special as any other child. I take her with me to the bank. One time a mother confessed to me that she had been hiding her child with DS at home because she didn’t believe that he could develop, look and act so normal," says Nereas.

Terry said the love and support of relatives and friends has helped Muthoni to grow up as normally as possible.

"We are a talkative family and Muthoni is forced to speak a lot to keep up with arguments over movies and documentaries that we have found interesting."

She can’t just afford to be left behind, Terry says.