By Kefa Senoga
In 2018, a patient in a Ugandan hospital labor ward developed a ruptured placenta. As expected, this emergency required all the attention of the medical staff on duty. Many of the women who were in labor in the same ward could only be assisted after handling the urgent situation.
Akut Suzan, who was among the other women in labor at that time, says when she eventually gave birth to her son, she and her son were exhausted.
“He did not cry at all,” Akut narrated during a recent seminar at Uganda Christian University (UCU) main campus.
“When I was discharged, he turned yellow and got jaundice. He got sepsis in the umbilical cord, and that part got paralyzed,” she recalled, adding, “By the time we returned to hospital for review, I was told the baby had already been affected, so they could not reverse his situation.”
The result is that for the rest of her life, Akut, who works as a house-help for a living, has to contend with mothering a child with cerebral palsy and other health issues.
At five years now, Ajono Daniel cannot walk by himself; his hands cannot hold anything and he has developed a conversion disorder. He is currently using a walker for movement.
At his age, Ajono would ordinarily be in his second year of a kindergarten class in Uganda. But that is not the case. He has not even started school.
Ajono and Akut were at the UCU main campus on February 16 to participate in a seminar for children with special needs, as well as their parents, and stakeholders. The two-day seminar, held under the theme “Unlocking the Potential Towards Inclusive and Equitable Education for Children with Special Educational Needs in Uganda,” started on February 15.
Akut, a resident of Makindye, a suburb of Kampala, says she has sought, without success, admission for her son in many of the schools that do not offer specialized care for children with special needs. The few that agreed to admit him, she said, increased the tuition fees, with the justification that Ajono needs specialized care. In addition, they asked Akut to hire a special caregiver for her son while at school.
Amidst all these challenges, Akut remains positive. Her husband and the father of Ajono has not abandoned the two. He has endeavored to provide the little that he gets to support his son, in addition to showing him “unconditional love.”
“He is not ashamed to carry him, even in public,” she says.
Information at the UCU seminar further reminded Akut that she isn’t alone.
At the dialogue, which took place on the first day of the event, the primary discussion centered on inclusive education, aiming to spark potential actions or policy interventions for the betterment of children with special needs.
The second day of the event was focused on fostering interaction with special needs children, along with their parents and teachers. The objective was to gain insights into their challenges and to advocate support. Akut said by attending the congress, she was able to share with parents who are facing the same dilemma.
When at home “you may think that the situation of your child is the worst, yet there are people out there in worse situations,” Akut said at the congress organized in collaboration between the UCU School of Social Sciences and Promise International, a US-based not-for-profit organization dedicated to empowering and educating children with special needs and their families in Uganda.
Representatives from the government, the academia, the National Union of Disabled Persons of Uganda (NUDIPU), United Nations Children’s Fund (UNICEF), among others, took part in the congress. Uganda’s minister in charge of disability affairs, Hellen Grace Asamo, was among the special guests.
Sarah Bugoosi, the Commissioner for Special Needs in Uganda, urged parents to embrace and support their children with special needs, and not to listen to negative public opinion about their children.
Dr. Jeremy Waiswa, the coordinator of the partnership between UCU and Promise International, said they fronted the partnership, so that UCU, given its strong foundation on Christian principles, can make a difference in the lives of children with special needs.
Waiswa said they took advantage of the congress to organize a medical camp for the children. The UCU School of Medicine provided 12 medical students who assisted the medical workers from the university’s Allan Galpin Medical Center to run the medical camp.
