40 years of living with down syndrome

A seemingly 14-year-old girl by appearance is seated in a chair right in front of a 32 inch black television screen. She is watching a movie when I enter the sitting room at the family home in Luzira, on the outskirts of Kampala City.
She has physical features typical of children with down syndrome. I have met several children with down syndrome so I am quick to identify her.
As the world marks the 12th anniversary of the world Down Syndrome Day tomorrow (March 21), Rebecca Nazziwa is among the adults who will be marking decades of surviving with the irreversible mental disability condition.

I had not met an adult with the condition, though that it does not cross my mind that Nazziwa could be an adult. She has a flat face with slanting eyes, a small mouth, a short neck and short arms and legs - typical of down syndrome victims.
She wears a smile on seeing me before she kneels to great me -as a cultural norm among Baganda, especially young people when greeting their elders as a sign of respect. Her gesture further confirms my earlier assertion about her age bracket. I think. To my shock however, Justine Kiwanuka Mbetiira, her mother reveals to me that her daughter is 40 years.
“I gave birth to this child (Nazziwa) in 1976,” Mbetiira says. “Sunday school nungi nyo,…Sunday school nungi nyo….eya bana batto” Nazziwa reluctantly sings clearly displaying immature bahaviours. She keeps rolling her eyes up and down as she shies away.

“More songs for Auntie” Mbetiira asks for more as the 40-year-old shies away “But mummy!,” she calls as she looks between figures.
Sunday schools are usually loose gatherings established on Sundays at churches to give more attention to children alongside the main church services for adults.
Mbetiira says Nazziwa sits among the children at the pentecostal church where she goes for prayers.
“Although we are Anglicans, we left her pray from the nearby Pentecostal church. We don’t want to stress her,” Nazziwa’s 61-year-old mother says. Such immature behaviours are what Nazziwa has been displaying for the last 40 years.

How it all started
Mbetiira says she realised when her daughter was six months old that Nazziwa had started breathing with difficulty.
She adds that: “She had been so weak from the time of her birth but we ignored it thinking that she would get better but in vain.”
It is at this moment that the mother of nine sought medical attention from Jinja hospital where the doctors revealed to her that the then six-months-old had down syndrome.
“We were demoralised because she was our first daughter,” Mbetiira reminiscences.
Although normally a children start walking and speaking at an average age of two, Nazziwa only started sitting and eventually walked at three years. And she started talking at the age of six.
It is also at the same age, her mother says, that she learnt to help herself when it came to answering the call of nature unlike other normal children who on average would do the same at the age of three.

Education training
At the age of 10 years when Nazziwa had grasped talking well, her mother said her mild intellectuality frustrated their wish to take her to ordinary schools as she could not settle and concentrate.
“The teachers at school were honest with us that she would not benefit much from attending school. We were told she spent the whole day loitering around the whole school,” Kiwanuka says that as such, they felt it was mistreatment to keep her in school.
Efforts to train her in vocational training were also futile as Nazziwa had lost interest in school.
Mbetiira recollects: “We even tried to take her to a special school for children with down syndrome but sometimes we feared that she could be raped on her way to and from school.”
As such, her mother said they decided to concentrate on teaching her how to do domestic chores like washing, peeling and mopping the house.

What it takes
As a mother of a daughter with down syndrome, Mbetiira notes that she had to adopt the best way to look after her daughter such as getting used to the constant mood swings.
She does not want to be imitated when speaking and wants to spend time alone most of the time. However, as a child, her mother remembers that she could interact very well with other children but had a very high appetite and slept a lot.
Although Nazziwa’s condition did not require her to remain on constant medication, she remains prone to flu and cough which cause her breathing difficulties, her mother says.
As the second born in the family, Nazziwa has lived to see all her young siblings graduate from school and getting married as she spends her time at home. Mbetiira says, “You can talk to her but she cannot reason or engage in a discussion when we are having a conversation at home.”

Experts
Dr Twalib Aliku, a pediatric cardiologist at St Catherine Hospital in Kampala, confirms that down syndrome also called Trisomy 21 is a genetic irreversible condition that results from when an individual has a full or partial copy of chromosome21.
“The additional genetic material alters the course of development and causes the characteristics associated with down syndrome,” Dr Aliku says.
He adds that since nothing can be done to reverse the condition, parents of such children can only adopt ways of raising their children and may be take them to special schools that trains them basic education skills of writing and reading.

Shafiq Kyanika, an occupation therapist providing support to people whose health prevents them from doing activities that matter to them at Special Children Special People (SCSP), an NGO established in 2010 to help young people with disability access education, rehabilitation and skills training, says children with down syndrome can still be trained to be independent.
“We try to engage them with functional activities so that they can become independent in life,” Kyanika says.
Training such children in daily activities such as washing, bathing, cooking, among others, Kyanika says help to keep them healthy.

“Such activities improve their intellectuality. When you train them, they have the eagerness to learn and copy them,” he explains.
To counter the stigma that is typically associated with Down syndrome, Moses Walusimbi, the executive director of SCSP, says that the organisation helps to advocate, empower and train families and parents of the children.
“Through our advocacy role, we help families to understand that down syndrome is not in any way related to witchcraft. We counsel their parents that they just need to get together and raise their children,” Walusimbi says.
To empower the families, Walusimbi says that SCSP trains parents of the children in different vocational courses like tailoring so as to empower them to take care of their children.

The burden

What had been expected as a blessing for the then young couple in their 20s quickly turned into a burden to the family whose life had been changed by the condition.
Due to the slow growth and mild intellectuality, Mbetiiira says she had to abandon her teaching profession and subsequently the primary school she had opened collapsed.
“No one would accept to take care of her even when I paid them to do so. Time reached when even the maids rejected her because of the burden that came with being her caretaker,” Kiwanuka recollects.
As a result, she had to give up her career and decided to settle and take care of her disabled child.

Mbetiira says having received timely counselling from the doctor that her baby had an irreversible condition, she was able to stand the stigma from the community.
“It helped me to dispute any thoughts and opinions that the condition could have been caused by witchcraft,” Mbetiira says with confidence.
Being a staunch Christian family, she says her husband and other relatives were supportive and understanding.
“As parents, we had to accept that she was a blessing from God. We decided to learn to take care of her instead,” she adds.

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