Angella Muwanga worked as a marketing personnel for a bank. She however, quit her job to look after her autistic child. As a single mother of three, this was not an easy decision but with support from her relatives, she was able to manage.
Since her son Austin has a learning impairment, Muwanga is imparting hands on skills to enable him get self-sustaining skills. Her journey to raising her eight-year-old son brings mixed feeling of joy and sadness, especially when she recalls the time he was denied a vacancy at a school.
Austin, her third child was born normal but when he turned two, he developed a fever and got episodes of violent convulsions. For him to get better, Muwanga tried almost everything.
“Many people recommended several herbalists who made concoctions for him. I also brought in a pastor to pray for him but there was no improvement. I then went to Dr Edward Kasirye, a paediatrician at Mulago hospital, who managed the convulsions until he was out of danger (for about a year). The convulsions continued although mildly.”
Besides the convulsions, Austin did not crawl, his balancing was off, he could not walk, and his speech delayed until four years. He hated jumping or running and whenever Muwanga took him out with his siblings, he could join other children to play games or play on the bouncing castle.
“Dr Kasirye referred us to Dr Justus Byaruhanga, a neuro paediatrician at Children’s centre in Bugolobi, who carried out tests and diagnosis. The doctor gave Austin lamotrigine, which I still call a wonder drug because it kept the convulsions at bay.”
Although she was unable to hire a speech therapist due to the cost, she was able to teach Austin to speak through the help of her friends and family who knew more about the issue. She also uses the internet to find materials she can use to help her child.
“When Austin was five years old, I got in touch with physiotherapists at Mulago National Referral Hospital and I attended about three of their sessions to see how they go about their work. With the knowledge acquired, I was able to help my son and soon he was able to move up and down the stairs in the house which he could not do before. His balancing was also restored.”
Her child has been off the drug since October last year and now she is fighting the Attention-deficit/hyperactivity disorder (DHD) and minimal aggression through a behavioural therapist. Muwanga adds that the seizures have also reduced greatly.
Dr Sabrina Kitaka, a paediatrician at Mulago Hospital, says although most autistic children do not have the learning ability in class, they are very talented in skills and teaching them hands-on skills is very important for their sustainability.
“These children may not be able to read or write but have the sight and many can listen to instructions. They should, therefore, be taught to work for themselves so that they are not dependants all their life,” says.
Muwanga says most children with mild autism can learn routines from their friends and playmates so she advises parents not to hide their children who may have the condition.
Many parents with autistic children and other disabilities are often shunned in normal schools and the few public special needs schools are congested.
“When I tried to enrol him in a school, the teacher told me that my child would beat up other children so they would not have him. I was badly hurt by those words. It is my worst experience as a mother,” Muwanga says.
Because Austin also has ADHD and aggression complications, he has low concentration. Muwanga is, however, glad that he has finally been enrolled in a school where teachers and friends understand his condition.
“They are very understanding even when he walks out of class,” she says, adding, he has learnt so many things from his colleagues and although he has a communication problem, I can see an improvement. He even welcomes visitors to our home nowadays.”
“Many parents who have autistic children with autism still live in denial, some giving them names such as “thing” or “half human” or “curse” but they should know they are also their children. Calling them such names affects them and may trigger a tantrum,” Muwanga advises.
She adds that at home, she has mastered the art of taming her tongue. “Austin is the youngest but I have tamed my older children not to use abusive and insulting language. Everyone was wonderfully made by God. This makes Austin feel loved and part of the family,” she says.
“There are times when I have knelt down before my son especially when he becomes aggressive. It is important for all parents to autistic children to learn how to communicate with them,” Muwanga says.
Many mothers whose children are autistic often face employment challenges because the employers do not listen when you have to leave work to go and calm down your child who is throwing a tantrum.
“My line manager told me to hire a nurse to take care of him but these people are not experienced so they will not know how to handle the child. I resigned from a good job because no one understands my son.
“Just like employers put lactating rooms for mothers or allow them to come in 9am and leave by 4pm, when I report bad health of a special needs child, I should be considered. It is not that they are sick all the time,” she says.