I am unsure of what to expect. I know that I am meeting Phumla Malambe, a 32-year-old nurse and mother of Onalena, a 12-year-old Autistic boy – but she is younger looking and, to be honest, more normal than I expected. She looks like anyone, but she has an extraordinary story.
Phumla is originally from Siviya, a village in the north of the country, but she has lived all over Botswana. Her mother was a teacher and was transferred many times during Phumla’s childhood.
When asked why she studied nursing, Phumla says that it was just a “natural fit.” She explains that she comes from a line of caring women.
“My Grandmother was the type of woman who, if you said you had nothing and nowhere to go, would invite you to stay and share what little she had with you, with a smile on her face.”
But Phumla’s caring nature ÔÇô her ability to love ÔÇô surpasses all expectations.
Whilst studying nursing at UB, she went on a practical visit to Princess Marina hospital, where in the children’s ward, surrounded by other unwanted children, she saw a small boy of about two, banging his head repeatedly against a wall and scratching at his face.
“He was wild,” she recalls, “none of the other children would go near him, even the adults seemed to be afraid to touch him. I promised myself that one day I would come back and get him.”
And she did.
Phumla explains that her “precious boy” was like so many of the other children in the ward, abandoned in the bush. “Someone heard him crying and took him to the police station and the police then took him to the hospital, where I found him”.
With unflinching eyes, Phumla states, “The other, normal children might find homes ÔÇô someone might want them. But I knew no one would want this little boy. He needed me and I felt a deep need to love and protect him.”
Upon getting her first job, at the age of 25, Phumla went back to Princess Marina to make good on her promise to her precious boy. “I could not adopt him as I was under the legal adoption age, but I was allowed to foster him. Then, two years later, I formally adopted him.”
It was during the fostering period that the now named Onalenna ÔÇô meaning ‘God is with me’- was diagnosed with Autism. Three years later he developed epilepsy.
Little help came with the diagnosis.
“Life is hard. It has ups and downs, but there are fewer ups with Autism. You have to really treasure the good moments, because they are what get you through the low points.”
When asked what the hardest part has been, the answer comes quickly. “The community turned their back on me. They could not understand why I adopted a child with special needs ÔÇô so they cast me down and out.”
“Being the parent of an Autistic child can be very lonely. You often feel isolated. Your child is rejected by the community, and therefore so are you.”
Sadness spreads across her face, but does not mask her steely determination. “But,” she says, with a thin smile “slowly that is starting to change, over time people have become more accepting ÔÇô some people even offer to baby sit now!”
Phumla is part of the newly formed association, Autism Botswana.
“I hope that through Autism Botswana we can form a community of people living with Autism ÔÇô so that we can support each other. No one understands the life of a parent of a child with Autism better than another parent of a child with Autism!”
When asked what a typical day entails, Phumla first wants to tell me about Ona.
And then becomes a parent ÔÇô one like any other. She smiles brightly as she talks about her little boy, she laughs ÔÇô eyes crinkling at the corners. She is a Mother in love with her child; her child is just different from mine.
“Ona doesn’t speak,” she explains “but he understands what is said to him. He is not completely toilet trained ÔÇô he needs to be reminded once an hour to go to the toilet. He struggles to sleep, and always rocks his body back and forth. But he laughs! And likes to do naughty little things to get a reaction out of me ÔÇô like all little boys.”
“He is affectionate. He gives kisses and cuddles on my lap, even though I often tell him that he is a big boy now! Too big for Mommy’s lap!”
“He seems to respect my mother more, and see me as a big sister. He’s always teasing me to get some kind of reaction out of me.”
Phumla’s mother has been ever-present in her Grandson’s life, providing support for both Phumla and her little boy.
“Without my mother’s kind words and kinder actions, without her support and guidance, I am not sure that I would have been able to cope.” Phumla admits.
“Would you do anything differently, if you could do it all again?” I ask.
“No.” Comes the solid reply.
“I would love to get married and have a child, but I know that there is little chance of that happening. A man would have to take me and my son ÔÇô we come together ÔÇô and that is too much for most, if not all, men.”
But not finding a life partner is not what scares Phumla most, it is not what makes her “shiver with fear”.
“Ona is now in a school for special needs, Camphill.” Camphill does not focus on Autism, but disability in general, and provides support and care for hundreds of children. But if his needs and behaviours become too much for the school to handle, he will be sent home.
“It is important for him to go to school though,” says Phumla, “He needs to learn new things, even if they are small things and it takes him a long time to learn them. And he needs to interact with people and learn more about life ÔÇô which he will do better at school than by just being at home all the time.”
“Through his school he has a life. A chance to learn about and interact with the world.”
But also, just as importantly, going to school gives his caregivers at home, his Mother and Grandmother a chance to restore themselves, and to also have a life.
“If there was not a school that Ona could go to my life would stop. He needs constant care ÔÇô like a small baby.”
Autism is a constant of extremes and is both emotionally and physically exhausting for the family. The needs are endless and the demands relentless ÔÇô raw emotions are always there, just under the surface, guided by unpredictability.
“Parents of Autistic children also need a break,” explains Phumla, “which school provides.”
“In order to give the level of emotional support and care that is needed, we need down time too. Many parents of Autistic children suffer from burn out.”
“Ona is a good person. He is a cheerful person. He is human ÔÇô he knows how to really laugh and his smile makes this hard world a better place for me. But if Ona can no longer go to school he will not have a life, and the laughter will stop.”
Ona comes home for weekends and school holidays, and when at home, just like at school, he needs his routine.
“Every day he likes things to happen in the same order, at the same time ÔÇô bath, then porridge, then time inside, then lunchtime (he loves to eat when he is home), then time outside with the dog. I would love for him to be able to change his routine ÔÇô to think for himself ÔÇô to not always go from A to B to C, but to sometimes go from C to A to B ÔÇô but that is very difficult for an Autistic person.”
“Routine is difficult for me,” Phumla admits. “I am not a person who enjoys doing things the same way each and every time. Sometimes I try and mix things up a little, and he will be okay with it, but mostly we stick closely to his routine.”
“It is very hard, but then I tell myself, ‘its life and I am still here.’”
She explains that she has made peace with herself and who she is. “I have been through all the emotions and have settled in my skin.”
“Ona used to be violent, and often hurt himself ÔÇô but consistent love, and a sense of belonging, of being part of a family, have gone a long way to healing his hurts. He is a happier child now. But if tomorrow I woke up with a pile of money I would send him to a specialist school where they really know how to help because with the right intervention real progress can be made.”
Currently there is no such school in Botswana.
Phumla dreams of a world where her child, who is different, does not get stared at, or shunned ÔÇô where if he shouts out on a bus, or rocks back and forth, she is not judged, and he is still loved.
Phumla, like all parents, wants what is best for her child, she just needs a little more help than the rest of us. So I ask you to ask yourself, what are you willing to do to help Phumla and Ona and others like them?
Autism Botswana is organising a walk on World Autism Day ÔÇô 2nd April 2013 ÔÇô to raise awareness of the condition. More details will follow in next week’s edition of the Sunday Standard.
If you would like to donate to this worthy cause, Autism Botswana’s bank details are:
Autism Botswana
Stanbic Bank
Account Number: 9060000002998
Branch Code: 060367
Autism Botswana can be reached at [email protected]
