She Is A Parent Of A Deaf Blind Child

Louise Otieno

June 20th 2011, Nairobi – Jane Ouko, a parent has decided to unfold the hidden part of her 16 years daughter Louise Otieno. She has overcome that stage where she had to confine her daughter because she is deafblind.

Jane tells this writer the agony of being a parent of a deaf blind child, in her own words, Jane says she has been through so much that the experiences become so routine to her she doesn’t fear them anymore.

Read Her story

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She Is A Parent Of A Deaf Blind Child

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Anthony Aisi

With the escalating high demands of both rural and urban life, many people with disabilities are not able to access quality services either for their basic livelihoods or their professional development.

Notable hurdles still surround the number of trained teachers helping deafblind pupils. That’s why Parents of Deafblind Persons Organization (PADBPO) is continuously lobbying the Ministry of Education to accommodate more people with disabilities by integrating more special needs teachers in schools.

Another challenge centers around health issues such as HIV/AIDS, which results in the loss of a number of parents of deafblind children.

Statistics show that 50 percent of blindness is caused by congenital rubella syndrome (CRS).

This is a viral illness, which in children usually develops with few or no symptoms, although adults may experience between one and five days of low grade fever, headache, malaise and conjunctivitis.

When rubella occurs in pregnancy, especially during the first trimester, fatal infection is likely and often CRS. This can result in abortion, miscarriages, stillbirths and severe birth defects. It has been found that up to 20 percent of the infants born to mothers who had rubella during pregnancy have CRS.

The most common congenital defects are cataracts, heart disease, sensorineural deafness and mental retardation. In an interview, Jane Ouko, National Treasurer of PADBPO, says that she tries to unfold the hidden part of her daughter Louise Otieno, who many people never know.

She reflects how some parents of deafblind children hide their children to curb stigmatization and ‘disgrace.’ Jane says she has been through so much that these experiences become so routine to her she doesn’t fear them anymore.

She encourages other parents to support their children adding that she knows what it means to be in that position. Raising Louise, Jane says she faced rejection, hatred and financial difficulties as she tried to support her and attend to her work as a teacher.

Jane recalls how people even told her she has been witched and should seek a witch doctor’s advice. Being the youngest of her five children, people referred to Louise as an ‘alien’ because she didn’t look the same as the other four. But Jane says took heart and struggled until the people who objected to her befriended her.

Louise, who is sixteen-years-old, has sight and hearing problems. She cannot hear and is partially sighted, meaning she can only see objects that are very close to her eye. When she first started at school she was very withdrawn and exhibited challenging behavior. She weighed 1.9kg at birth, an abnormal weight which was the result of a hole in her heart.

This made her life very complex and challenging but Jane says the hole healed from prayers and faith. Louise had a morbidity problem and was not able to wash and feed herself or communicate with her family. She was taken to a deafblind school at Kilimani Integrated School in Nairobi.

Today, after long and thorough assessments with specialist staff at the school, Louise is now able to walk by herself, wash herself and use utensils. In school she does bead making, which the school sells along with other objects made by pupils with disabilities as a way to generate income.

Louise’s transformation has been extreme and her family life has improved. Jane is so grateful to Sense International, an organization that covers various countries in the world and also has offices in each country of East Africa. Its aim is to help deafblind people in less developed countries to communicate, connect, interact and flourish.

Jane says Sense International made her dream come true. Jane is calling on the government to intervene and help Kilimani Integrated School accommodating more people with disabilities by appointing more special needs teachers in the school so that every student is well attended to.

By Anthony Aisi

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