Living with Daniel – Nursing a 10-year-old through autism

Nursing a 10-year-old through Autism can be very challenging, the parents of Daniel Ogunnubi admit in this piece. Rather than stigmatise, the parents implore the public to empathize with and support children who have special needs.

That night in 2007 when Yewande called Yinka to say she was in labour and was heading to the hospital, all he could do was pray and wait. She was a Graduate Law student at the University of Capetown, South Africa, while Yinka lived in Lagos, Nigeria with their four-year-old daughter, Tomisin. The couple had planned to have only two kids and had spaced them so that they could provide them with the best possible while also developing their different professional lives. By morning, Yewande shared news of the arrival of their son, Daniel Ogunnubi.

Dark, hairy and with a big smile, Daniel was the perfect infant. Nine months later, he was brought to Nigeria. Shortly after his first birthday, Yewande knew something was wrong and told her husband; but he wouldn’t agree until a year later. “From the age of two, I started getting concerned. He would point at things rather than ask. He was always in his own world, mumbling and humming. He would throw tantrums unnecessarily and was impossible to control. His activity level escalated, wouldn’t say a word and wouldn’t respond to his name,” Yinka explains to us.

When Yewande suggested that Daniel’s symptoms leaned towards autism, faith-filled Yinka would respond: “This is not our portion. This is not what we signed for. We are Christians, we pay our tithes, we go to church, we don’t deserve this so don’t verbalise it.” But when a visiting pastor friend asked that God delivered Daniel in a casual family prayer, Yinka woke up. “So everybody knows,” he thought and he began to rethink his approach to the situation.

At age three and half, and after uninspiring contacts with different Centres for Special Needs Children in Lagos, the couple finally found Patrick Speech and Languages Centre. “They were just after fees (other centres). We didn’t feel they took us seriously. I wanted them to speak to our concern but they weren’t. Then someone introduced us to Mrs Akande of Patrick Speech Centre. We called and she gave us an appointment. Less than two minutes that we got to her office, she said ‘let us pray.’ And that was it for me. We found somebody who connected with our pain without trying to see what she could extract from us.”

Dayo Akande is the founder of Patrick Speech and Language Centre, Lagos. In eleven years, her institution has helped over 500 families living with autism, within and outside Lagos. She recounts her first encounter with Daniel and how his sterling progress was achieved: “When Daniel came, he had no pre-academic or self-help skills. He threw tantrums easily especially when you didn’t let him have his way. But he loved singing and learnt very quickly.”

After a couple of tests, Daniel was confirmed to be on the low end of the Autism Spectrum Disorder (ASD). He was placed on intensive language and behavioural therapy, in addition to attending a regular school. For one year, the family ran a difficult schedule. “It was quite challenging for us on many fronts. Financially, it wasn’t cheap. Logistically, it was a nightmare. Therapy was after school so we detailed someone to pick him up after school and wait through his therapy to bring him home afterwards. His diet was different from everyone’s so he had a different pot in the house. What they are taught at the therapy school, you had to reinforce at home. It is called tough love.”

But it soon began to pay off. As a toddler, Daniel would arrange a 100 piece puzzle easily, then he graduated to 200 and 300 piece puzzles. Soon the parents discovered that their son had good analytical and cognitive skills. At the age of four and half, Daniel said his first words. It was ‘give me.’ Yinka recalls how his wife called him at work to tell him: “We both cried on the phone.”

“The challenge is in not having any guarantees for recovery in spite of treatment. It’s difficult risking bankruptcy over a chance. But the implication of deciding otherwise is that the child doesn’t get the quality of help needed, and that’s heartbreaking for a parent,” Yinka explains the difficult options many parents of special needs’ children in Nigeria have to contemplate. And it’s not just this.

“We had to answer questions like, ‘if we want to go out, can we take Daniel out?’ You don’t ask such for regular children. If we want to go to a party, we think hard because if he starts his tantrums, he doesn’t care. There were instances when we’d leave a place earlier than we’d planned. Of course it’s not spoken but everyone understands why you have to. Sometimes you’re at a party and everyone’s looking at the child. They’re not saying it, but you can read their thoughts. Stigma is a big issue but we managed it.” “To some extent, it prevented us from coming out and it’s the reason why we need to have more of these conversations,” he continues. “Not just for the children, but for other kids and adults around them so we can understand and empathise. So when you see a child behaving somewhat abnormally, don’t turn away or turn up your nose. Say something to see how you can help calm the child.”

Keeping a 24-hour watch on an active child can be very exhausting so the Ogunnubis enlisted family to help out through those difficult years. “The moment we named the condition to be ASD, we called a family meeting. ‘This is what we’re dealing with, we need your support, pray along with us.’ They asked what they could do to help and we said they have to treat him as they would a normal child. He must not feel different. ‘If you can, take him off us for some time.’ So each time he left, Eunice (Daniel’s nanny) would follow. We were incredibly supported by family because we opened up to them and asked for support.”

On March 20, 2017, Daniel celebrated his 10th birthday. Now in Basic 5, Daniel has featured in three sitcoms, plays the piano, sings, enjoys computer and board games, and is an avid lover of Maths. He hopes to become an inventor.

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