12 June 2012

Uganda: Special Needs Centre Opens, Seeks Support

Five volunteers flurry around the Tunaweza Children's Centre in Ntinda, inflating balloons and hanging up colourful posters.

The air is electric as they prepare for a party, hoping to generate publicity and financial support for the new facility. Tunaweza, "together we can" in Kiswahili, opened on June 1 to serve Ugandan children with special needs.

Titi Pamela Kakonge founded the centre. She is a Kampala-based lawyer. Her daughter suffered brain damage during childbirth. Kakonge struggled for years to find the help her daughter needed in Uganda. She now hopes to give special needs children the skills they need to live independently and erase the stigma that Ugandan society attaches to them.

For years, Kakonge travelled to Kenya, South Africa and the United States to get her daughter help. In early 2012, she decided to build that support here in Uganda. Her centre now serves 11 Ugandan children, but has capacity for 20.

"The biggest challenge to making this centre work is going to be resources," Kakonge said. "With such children, you need the financial and the human resources to give them what they need."

The recent fundraiser drew 45 people, including Ferrie Wegoye, a woman who works in fashion. Donning a stylish yellow blouse, Wegoye surveyed the Tunaweza facility as the crowd of her fellow benefactors arrived.

"I am here to learn more about the centre," Wegoye said. "I'd like to better understand the work they hope to do here."

The centre serves children with cerebral palsy, brain injury, autism spectrum disorders, intellectual disability, speech impairments and paralysis. It provides physical, occupational and speech therapy.

Tunaweza hopes to begin therapy sessions as soon as symptoms of a special need appear. This can be as young as two years into a child's life. Experts believe this early intervention can make an immense difference in the capacity of special needs individuals to live independently.

Winifred Kobujuna, a government accountant, has a daughter with cerebral palsy. Her daughter has difficulty speaking and walking. Kobujuna hopes to enroll her at Tunaweza.

"I have seen the setup and I like it because they are aiming to have a manageable number of cases," Kobujuna said. "I know that here my daughter will get all the attention she deserves."

Tunaweza will also host support groups for the families of special needs children. These group-counselling sessions will equip parents and caretakers with the skills to help their children develop. They will also help families work against the stigma that Ugandan society attaches to this community.

"I never knew how important family was until I needed their help in aiding my daughter," Kakonge said. "Too often in our culture parents blame themselves when their child has these needs and we must end this sort of ignorance."

Kakonge brought in five volunteers from Boston University in the United States to get the centre off the ground. They work six days a week in an unfamiliar place. Kakonge provided their airfare and accommodations. Dana Pelerin, a member of this team, is one of only five speech therapists currently working in Uganda.

"Most of us take for granted our ability to say what we want," Pelerin said. "I want to help all of those who cannot."

Karen Contador, another volunteer team member, is Tunaweza's programme director. She guided the fundraiser's attendees on tours around the facility, pointing out a playroom, sandbox and therapy offices.

"Even though there is that stigma, all the families here know other families that need help," Contador said. "Every single Ugandan knows someone who could benefit from this type of support."

Mary Kakonge, a relative of the centre's founder, applauded Contador's energy.

"Your enthusiasm is just contagious," Mary Kakonge said.

"Even though it's a challenge, I'm excited about the work we are doing here," Contador said. "If we can put a man on the moon, we can help out children with special needs."

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