Raising a son with autism helped me find my life purpose
Some people are born for a purpose. But some give birth to their purpose.
Pauline Wamukowa, a wife and mother of three children - Imani, 13, Daniel, seven and Selina, five - falls in the latter category. When Daniel was born, though he tipped the scales at a mere 2.7 kilos, his parents did not have the faintest clue he would be the heaviest child they’d ever carry.
Heaviest in terms of care and support. Heaviest in terms of the emotional toll on the family. But, vitally, heaviest in terms of distresses, he would palliate from scores of parents and children, who would receive Cardiopulmonary resuscitation (CPR) in a centre bearing his surname; Mali.
Daniel may have been a tiny baby, but he never crawled. He walked at nine months. He was always getting ear, nose and throat infections. At one year, when one called him, he would hum in reply. By the time he turned two, his parents had decided have his tonsils and adenoids removed. Still, there was no speech.
Pauline and her husband, John Noko, were advised to take him to school.
Mama’s grief
The school - complete with diary and progress reports- for a whole year - elaborately lied to Pauline that Daniel was fine. They told her he was eating mandazi, yet, at home, his food was blended.
“A teacher’s conscience got the better of her. She pulled me aside and ratted out the school, telling me that, when I dropped Daniel, I should stay at the parking lot and watch.”
Pauline did just that. At around 10 am, children came out to play. After the break was over, all the children returned to class, except Daniel.
“Nobody was concerned. Daniel played in the sand. He cried. He fell asleep in the sand. I wanted to rush to my son and save him.”
When Daniel slept, Pauline snapped. She rushed, snuggled him in her arms and scurried to the principal’s office. She wanted to know why her son was being treated like a child of a lesser god.
Initially, the principal was defensive. When Pauline pressed, saying she had video evidence, they told her theirs was not the right school for Daniel, as they felt he had developmental issues. They advised her to take him to Gertrude’s Children’s Hospital to get a diagnosis.
“It’s like Daniel was disturbing them, and he would only get peace at the playground. No one cared. No one bothered. Even when I was throwing a tantrum, they were looking at me like, ‘Kwani, you didn’t notice?’”
Seven long days
The next day, Pauline took Daniel to Gertrude’s. Gazillion multi-coloured lightbulbs popped up on top of Pauline’s head when they began doing tests.
“Does he have any words? No. Does he tiptoe? Does he scream? Does he hold his ears? How is his eye contact?”
“I was like, ‘Oh my God? How come I didn’t see all these, and I have an older child?’ I felt like I’d failed my boy.”
“The results came after seven days. Those were the seven longest days of my life.”
Like many parents who are hit by such curveballs, Pauline and John didn’t know what autism was. And when Pauline learnt it had no cure, she felt like dying.
Acceptance wasn’t just unpalatable; it was poison to their kosher of faith.
Fellow feeling
At their doctor’s suggestion, Pauline joined the Facebook group “Kenya Autism Alliance”.
“It’s on that platform where I shared my harrowing school ordeal. I opened up. I told them I needed a map and a compass because I was lost.”
“Suggestions came, fast and furious. Applied Behavioural Analysis (ABA) therapy. Occupational therapy. Speech therapy. Everyone has what has worked for their child because autism is a spectrum. What works for you might not work for me.”
Pauline was directed to an early intervention specialist. After assessment, the specialist recommended occupational therapy, which would calm Daniel down, sit in a classroom, write, and be toilet-trained. Next, they could think about speech and other developmental parameters.
“I was happy we were going somewhere. We would buy supplements worth 36,000 per month. They helped in calming him down and improving his attention.”
“After one year, the therapist was upfront, confessing that’s all they could do. She recommended several schools, or, if that didn’t work, home-schooling.”
Pauline knocked on doors of different schools, but they were all slammed in their faces.
In pursuit of a cure
“I started doing my research on other treatment options outside Kenya. I settled for Applied behavioral analysis (ABA) therapy in the Florida, USA at Therapy for Kids.”
“When we left in January 2018, I was sure my son was going to get cured. If he’s not cured, then, at least, an improvement. Because I’d been told it was the best in the world.”
They budgeted for a three months’ stay. But fate fed their plan to Florida’s notorious gators. The assessment took one month. Month two, they caught the Florida flu. They didn’t have medical cover. They didn’t know anyone there. They were coughing up Sh 10,000 ($90) per day for accommodation. Daniel’s therapy gobbled a staggering Sh 500,000 ($4,500) per week. Plus, thoughts of her small baby, who was not even one and a half years old, her firstborn child and husband in Kenya, kept tormenting her.
Pauline stayed with Daniel for around eight months; then John relieved her.
There was no change. Daniel wasn’t toilet-trained. He wasn’t feeding. He was almost four years old, and all this time, he’d been eating mashed food.
Sacrifices
Their treatment sojourn drained them emotionally and financially. They sold two cars, thinking that Daniel would be hale and hearty at home by the end of the year.
“It was bad for our family. You have no words to explain to your children why you’re downsizing. When my husband relieved me, we had two months’ rent arrears, and we moved to an apartment.”
“The children kept asking questions. I didn’t have answers. Nobody prepares you for such twists and turns.”
There was a time Imani and Selina didn’t go to school for a year due to a lack of school fees. It was choosing between Daniel going to India for stem cell therapy or the other children’s schooling.
Daniel said “food” and “mom” three days after stem cell surgery. Those were his first words. But they disappeared again. Until he was around five-and-a-half years old. From India, they stayed a few months in Kenya, before returning to The Sunshine State.
“In 2020, I went with Selina and Daniel. I left Imani with my best friend.”
“Imani was inconsolable. She accused me of abandonment. She’d cry over the phone. ‘Is it only Daniel you care about? What about me? And if it’s not only Daniel, why did you take Selina?’”
It reached a point where Pauline made a heart-breaking decision not to call. Because all hell would break lose. Which would break Pauline’s heart to smithereens. Tough love can be tough both ways.
Imani had a visa, but they decided that, since she missed school, she would remain in Kenya. They knew they would stay for three months, and she would visit over the holidays. But Covid-19 dumped a full honey wagon on their plans, forcing them to return home in August 2021.
Awareness crusader
Daniel is now toilet-trained. He feeds himself. He’s integrated in school. He attends a mainstream school. He speaks. He writes.
What Pauline did differently, which she wants to bring to other parents, is therapy. Not just one, but a more holistic and intentional approach.
“I was intentional in making Daniel independent. I focused on life skills. I focused on teachinwg him how to, for instance, comb his hair and brush his teeth.”
In 2018, Pauline registered Mali Autism Awareness Centre.
“My idea was setting up a centre that’s good enough for my son, however long it takes. We’ve spent millions on therapies. ABA isn’t rocket science. Why aren’t we offering it in Africa?”
At Mali Centre, they will have parents’ and caregiver training, besides therapies.
“We opened our doors in February. Our open day was on Saturday, February 5. We had neurologists, occupational and speech therapists, ABA therapists from within and without, and physiotherapists. We also invited parents to come and check us out.”
Pauline says parents should not fear that because this oasis is located in lush and leafy 259 Miotoni Road, Karen, they’ll have to rob a bank to afford sipping from its curative waters.
“We’re not a school, but an early intervention centre. We train and prepare autistic children for school. We’re in the process of partnering with some schools for integration.”
The centre has subsidised rates for all available therapies. They’re not charging per hour because, from their experience, they’re mindful that, for many Kenyan families, careening into poverty is just one debilitating diagnosis away.
After opening, they will start daily classes, Monday to Friday, 8 am to 3 pm. This is because autistic children must have similar hours of learning as their neurotypical counterparts. In those hours, they will have therapies and special education teachers. They will be trained to a level where they can attend mainstream schools.
After three months, once a week, the children will be taken to mainstream schools, then get progress reports from the schools. The reports will show if the school can absorb the child.
The centre will do Individualised Education Program (IEP) reports for every child. Then, with the help of a shadow teacher, they will integrate the children and, with time, distress-free inclusion in society.
“Autism isn’t a disease. It’s a neurological disorder. In all these therapies, early intervention is key. Our vision - which comes from a personal experience - is: ‘Early integration, early intervention and inclusion.’”
Daniel’s sisters have metamorphosed into more beautiful beings than butterflies; guardian angels. Imani is running the awareness relay with mama. Pauline wants to include her in school training to share her personal experience.
Selina and Daniel attend the same school, but she’s a class ahead. The school says she’s profoundly protective of Daniel. During breaks, the baby sister makes it her business to check on her big brother.
Daniel attends therapy five times a week, three hours a day. To balance on this thinnest of tight ropes she’s been walking on in steel-soled stilettos, Mama Bear has girls’ dates with each daughter, on different days; plus, quiet times with her man.
“I’ve found my purpose. Or, should I say, my purpose found me? Immediately after we got the diagnosis, I stopped working a job. And I started working on my calling.”
