As part of the Connecting the Dots programme, in partnership with Sense International, we are making sure people with deafblindness can live independent lives.
Most families would have difficulties communicating with a child with visual or hearing impairments, but for the families of children who are deafblind, this comes with its own unique challenges.
Alice Nabbanja of Sense International tells us how the programme supported 14-year-old Hellen and her family from Masindi, Uganda, by helping them communicate with each other, and teaching them to rear pigs so they can support themselves financially.
Hellen has a supportive and loving family, yet when Alice met them they were unable to communicate with her. “There was a distance between them. Hellen could not express herself; and no-one can express themselves to her,” says Alice. “She wanted to be near them, but due to her unique behaviours, everyone feared she might hurt them. Likewise, she doesn’t know when she is safe around someone.”
Alice taught the family how to communicate with Hellen without using speech or visuals. She explains that first she showed the family how to establish their presence in a non-threatening way, on entering a room.
“They saw how I sat with Hellen and like magic, in a few minutes she was very comfortable with me. She knew I was a guest, a stranger, but not a dangerous one.
“We sat quietly, which gave Hellen time to come and find us. She touched, and felt everyone, and smelled us up close to differentiate between us. She could feel who were the men, and when she decided which of us she wanted to befriend, she came and sat close to us. The family observed and learned.”
Establishing a routine is also an important tool in helping deafblind children do tasks independently. To help with this, Alice provided a ‘calendar box’ which contains everyday essential objects, such as a toothbrush, a cup, a comb, and getting Hellen to touch these helps her to understand what to expect next.
Supporting deafblind children
Alice Nabbanja explains how she worked with Sightsavers to support other children with deafblindness in Uganda.
Read Alice's blog
Teaching children to smile
It can be distressing for parents of deafblind children when they are unable to smile. Facial expressions are such an important way to express our feelings, yet Hellen had never seen them, so had not been able to mimic them as other children do. Hellen’s mother would blame herself: ‘What have I done wrong to have never made my daughter smile?’ she asked.
Alice tells us how she taught Hellen to smile and laugh by using touch. “I got her to touch my face and I made various facial expressions. Then I would touch her face, and she started imitating me.
“I also taught her how to laugh – I made ‘hahaha’ sounds. She touched me and then copied what I had done, and began to laugh.”
Hellen’s greatest challenge was that other children feared her. So Alice worked with her siblings and the children in her neighbourhood to help them understand how she experiences the world, and to find ways to include her appropriately in their games.
“To see her now, smiling as she joins in a game with her siblings, I see the difference Sense International and Sightsavers has made. As a parent, to see your child happy, is as much as you can ask for.”
Sightsavers’ work with Sense International supporting young people with deaf blindness and complex disabilities has been made possible thanks to funding by the National Lottery Community Fund.
“What have I done wrong to have never made my daughter smile?’
“To see her now, I see the difference Sense International and Sightsavers has made”
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