Saturday June 21 2014

One mother’s 24-year-long struggle to raise an autistic son

 It was a struggle getting Daniel Kato to have his pictures taken, until

It was a struggle getting Daniel Kato to have his pictures taken, until he was offered a chocolate bar. His mother, however, was on hand to gently coax and calm him down like she has had to do for the last 24 years of her son’s life. Photos by Rachel Mabala. 

By Emmanuel Ainebyoona

Welcoming and compassionate, Maliza Ssebakiggye ushered us into her humble home in Kawempe. She led us into her house through the back so she could introduce us to her daughter and three grandchildren. Very excited, the little ones immediately clung on to us as if we were part of the family.

Ssebakiggye is a retired professional teacher, now venturing into tie and dye business to provide for the family. She is 51 years old, but looks nothing like her age. This is even more amazing after she narrates to us what the last 24 years of her life have required from her as a mother raising a child with special needs.

They were normal babies
She narrates how on a winter morning of June 28, 1990 while in South Africa, she was blessed with a pair of twins, Josephine Babirye and Daniel Kato. Like any other babies, Nnalongo, as she fondly known as, says the twins were nothing but a joy, with only the expected night’s awake and constant feeds.

“They were growing at the same rate, they both started walking two weeks to their first birthday and seemed to have their own vocabulary with which they communicated to each other. For instance, I remember a time Babirye saw a cat and they both started communicating to each other,” recounts Ssebakiggye, adding, “Basically they grew up normally like normal children.”

Discovering the Autism for the first time
When they were almost three, however, the mother says she noticed that Kato’s communication skills seemed to stagnate. Kato started becoming withdrawn and became interested in picking up and twirling objects like sticks, withdrawing into himself and his vocabulary not improving. “The first doctor we took our concerns said he had a tongue tie (akanyata), then we took him to another specialist to assess his hearing,” says Ssebakiggye.

She adds that they stayed and worked in Botswana, where she was teaching. They also tried a speech therapist in there who wrote a long narrative ruling out any signs autism. “It was one of my sister who is a medical doctor who was the first one to tell us that Kato was autistic. I went through all the five stages of denial until I believed in God,” says Ssebakiggye adding that she did not want to hear her child had any condition of any kind.

She says at first she did not know what autism was. “I denied it for some years, then I slowly forced myself to learn and adjust to it but the process was long since every day was different. The learning has not stopped,” she recounts.

“I would say that autism means withdrawing into oneself, aut...ism,” she explains. She adds that mothers with children living with the condition first live in denial. She says those with the means try to first seek out every possible solution, most of them taking their children for special treatment abroad.

Scientifically, autism is a condition that affects social interaction and behaviour. It is also referred to as Autism Spectrum Disorder (ASD). It is diagnosed behaviourally. This can be observed by an individual’s actions.

Autism is known as a complex developmental disability. Experts believe that Autism presents itself during the first three years of a person’s life. The condition is the result of a neurological disorder that has an effect on normal brain function, affecting development of the person’s communication and social interaction skills.

Raising my Daniel
“Any mother who tells me that she has an autistic child who is six years. I feel pity for them because at that age they are very super active,” she added.

Autistic children have to be watched all the time. For instance, Kato’s mother recounts how he was once knocked down by a speeding taxi while staying with the grandmother. Kato was not with a caretaker that day. “The father and I were out of the country and he developed epileptic fits after the accident, which lasted for three years,” says Ssebakiggye. She says Kato was recently taken to have a dental procedure which had to been carried out in the theatre because of his delicate condition.
“He has to be bathed and have all the other hygienic processes done for him,” adds Ssabakiggye. She notes that autistic children tend to bond with one person and usually not their mother, “Kato bonded with Maureen, more than any other. Maureen OKunga is Kato’s cousin who lives with them.

“Loving the child is the best gift you can give them,” says Okunga. She adds that talking to them is very important. “Kato responds to conversation.” Kato is called “Didi” at home, a name he has adopted since childhood.
Referring to one of photos, she explained: “Kato is a very handsome boy. He used to like posing for photos with his sister, Babirye.”

School days
On June 28, Kato will celebrate his 24th birthday. He went to a special needs school, Shimoni, before it was relocated from Nile Avenue to Kololo. But Ssebakiggye says that time came when the cost of taking Kato to school became unaffordable. “We resorted to keeping him at home,” she says.

Kato responds to three languages; English, Luganda and Lulamogi.
Ssebakiggye advises parents with autistic children not to be rigid but understand the condition. “For autism, you have to accept and move on with life,” she advises, adding she gave birth to Victoria Nakityo, the twins’ younger sister, after three years. “Most mothers get stuck at that one child and fail to settle by moving up and down to different hospitals and specialists because they have the means and fail to understand,” says Ssebakiggye.

One sure thing, she explains, is that autistic children are clean and neat. She explains how Kato calls for assistance to be cleaned after using a toilet. “You need to get a househelp who understands the child. For instance, Kato has to be bathed and dressed with someone’s help every day. He has no sense of nakedness,” she explains.

Adolescence hustles and special care
Despite his condition, Kato experiences all the stages of development, including the adolescence stage. “There is one househelp, Flavia Nakazzi, who I thought Daniel was attracted to. He was 17 at the time. He loved her so much and they could sit in a sofa like a couple in love,” Ssebakiggye narrates.

The said maid apparently showed him care and love, cleaned him up, and never yelled at him during his growth spurts. His mother adds that Nakazzi would wash Kato’s bed sheets even after he had wet dreams, one of the signs of adolescence among males.
Otherwise, Kato remains a delicate child. “I have to ensure he does not get bitten by mosquitoes,” says Ssebakiggye. “Kato does not swallow tablets. We crush them and then cajole, beg and coax him into swallowing the powder,” Ssebakigge says, in explanation to why they would rather he was not sick.

She observed that doctors should also learn how to handle children with autism, “one day I had taken Kato to hospital and when he saw the doctor, he ran and hide until the doctor had to first put off the medical attire,” she notes.
Ssebakiggye also says autistic children need their special diet, saying that they don’t take soda at home because it makes them hyper. But surprisingly, Kato loves chocolate.

The evening we visited, he seemed not to be interested in us. He had refused to come and greet us until a cousin presented him with a bar of chocolate. Taking his photos also proved to be a hustle. When chocolate was brought, he extended nearer and for the first time he put a smile on his face, his dark skin complexion illuminated, revealing a handsome man.

In this together with his father
Ssebakiggye says she cannot take for granted the efforts of her husband, William Ssebakiggye, who has dedicated his financial support although he is currently living abroad. “I would not have been able to bring up the children without his consistent financial support,” she says.

Kato’s twin sister, Josephine Babirye, has already graduated with a bachelors’ degree in journalism. She is now doing photography in Nairobi, and plans to open up an information resource centre for autism.

“I think Kato’s condition ultimately made me a more private person to avoid explaining to people about his situation. I decided to keep to myself instead,” she explains.

For continued support and counsel, Ssebakiggye belongs to the Uganda Parents of Autism Association (UPAA) chaired by Pross Owino.

Owino says, “We meet and discuss like parents and also encourage those who are new on medication, which doctors and which schools to take their children. We also educate them on how to look after the children.” UPAA was founded in 1998 and currently has a membership of 30 parents. Ssebakiggye says she is thankful to her Pastors; Robert and Rose Nabulere of Miracle Centre, Kawempe, who built her spiritually and also helped her in mothering Kato.