Monday, April 4, 2016

The News that Changed me Forever

World Autism Awareness Day 2016, April 2, has passed but it's still Autism month, and we are still talking about autism. Last year April, a mother who has 2 boys on the spectrum shared her experience with us on the blog. This year, a father is sharing his experience. Wow!

Children with autism do not have mothers only, they also have fathers. And I am excited sharing this father's story because I cannot forget the first time I saw his Twitter account; his bio tells us that he has a son on the spectrum. I am particularly impressed because this is Nigeria, where people are not so open about their children's challenges. So it is amazing to see a Nigerian man talk about autism openly, using his son as inspiration. Read his story about getting a diagnosis for his son:

"Thin voice that had caused dryness in my mouth, continued. ‘I can see mom and dad are not prepared for this.’

I turned my head to my partner beside me. When we interlocked our hands, I’m unaware. I can tell she’s suppressing her reaction to the news; her lips are rolled in firmly. She closed her eyes. With thumb and index fingers of her right-hand she dragged pool of water that formed on her eyelashes to her nose bridge. My jaw quivered. I become aware that I’m crying, too.

Clearing my throat, ‘Are you sure?’
The hijabi paediatrician, nodded. ‘It’s a lot to take in, I know.’

The wishful part of me gazed at our son fiddling with movable light attached to the exam table with blue disposable sheet. As usual, his numerous toy cars he wouldn’t leave home without are on windowsill of the doctor’s office, like cars in Lagos traffic.

It had bothered us that aged three, our son, was yet to say a word. When he began to walk at twelve months, his narrow interest of lining up his toy cars, stacking tin-food, watching the washing machine spin in the kitchen became obvious. Though we didn’t think it unusual then – ‘boys are late-bloomers,’ we thought.
And then, at eighteen months, we enrolled him into a nursery. During his settle-down week, my partner and I were shaken to discover that all of his classmates were responding to their name, showing awareness of the class supervisors and called their attention to play objects by finger pointing. They could also babble, discernibly, words of some sing-a-long rhymes. All of which our son won’t do then, and has neither shown interest nor ability to do, now.

Initiated by the paediatrician, in the past ten months, we had attended different clinics in our local community to have our son assessed by, first, an audiologist, then an occupational therapist, an educational psychologist, and lastly, a speech and language therapist. And now, the paediatrician, within one minute of sitting in her office, informed us that all the professionals observed that our three-year-old son is on the autism spectrum.

My mind is still racing in many directions, unable to focus. It doesn’t look like my partner wants to be in this consulting room any longer, either. We had only heard of this disability in these recent months of attending our son’s many referred appointments. One child in every hundred is autistic in Britain. There is no cure. Why is our son that ‘one’ child?
The British-Asian doctor’s voice pierced my thoughts, again. ‘It’s the last thing you want to hear, as a parent. I know.’

Disability to me was physical: discoloured eyeballs, mute eardrums, a withered arm, or depending on a wheelchair or crutches, for mobility. None of these, yet our son is disabled? I’m angry. The stigma of the label troubles me. Sniggers we get from passersby when out in town will merely turn to sighs of pity, if we said.

‘You don’t have to include disabled on our son’s health record, do you?’

My partner nods. I could tell she shares my thought. Both of us stare at the paediatrician who, though using empathetic words, keeps a blank face. She touched brooch holding her turquoise head veil, which also covers her shoulders, in place. ‘It’s your choice, as parents, whether to have your child officially diagnosed or not.’ And after a pause, ‘You don’t have to make that decision today,’ she added. ‘I’ll give you some materials to take home. There’s support for autistic persons and their family. But I must tell you, early intervention is vital. Without a diagnosis, he can’t access any support.’

The change in the paediatrician’s voice tone toward end of her statement was enough to tell she isn’t simply informing. It’s a warning.

As if to ensure that we understood her, after typing ‘Parents made aware of ASD condition’ into our son’s health record page on her computer screen, she turned to us.

‘Our community struggle the most to accept an autism diagnosis.’

I quickly gathered that with ‘our’, the doctor meant Asian and African community in Britain, herself being of South-Asian descent.

She added, ‘The parents come back too late. Please don’t do that.’ Her face yet blank. But this time her tone suggests she’s disturbed by this observation.

Our son is crying, tugging at his mom’s legs. He had tidied his cars and we hadn’t followed him when he walked to the door. He’s frustrated. He punches and wriggles as my partner lifts him to thigh.

‘I won’t keep mommy and daddy any longer. I promise.’ Ending our appointment, the doctor passed three leaflets to us. The leaflet she picked from beside her computer on the desk, reads ‘EarlyBird programme,’ National Autistic Society (NAS) below. The other two she retrieved from her drawer informs about Special educational needs, and Disability living allowance (DLA), respectively. 

Hooking her reading glasses atop her hijab, looking solemn, ‘You don’t have to book another appointment to see me,’ the paediatrician said. ‘A phone call that you’re okay with the diagnosis will be fine.’

It’s April again; World Autism Awareness month of the colour blue. Our son has turned 8, making educational and social progress undoubtedly impossible without readily available support and care. My partner and I were both blind to disability in general, before our son’s diagnosis. It’s easy to be.

And while I welcome parent driven autism initiatives in Nigeria; associated cost of autism support, to society and the affected family, put at £1.5m, makes it a Sisyphean task without targeted support from the Nigerian government (Federal and States), plus intensive campaigning on day-to-day challenges faced by persons living with disabilities in Nigeria.

Sadder, this past month, it was revealed that autistic persons are dying ‘thirty years’ younger than rest of the population in Britain. How young do autistic persons die in Nigeria, where average life expectancy is 54-and-a-half years?"

1 comment:

  1. Wow! The story is so touching. I think the man's delivery even makes it so...