Disability
Today is world mental health day. More children than ever are showing symptoms of mental illness. Some are having to wait up to thirteen years for treatment. This morning’s Today Programme (an hour and nine minutes in) interviewed a young man who deteriorated considerably after having to wait just a fortnight.
What can I say? How long has Bink waited now? She was first diagnosed in the millennium year. The only thing which can be said for which is that the arithmetic isn’t difficult…
Spring 2003
Back home again I went for a routine scan, a few weeks late because of having been in Scotland.
It seemed to take for ever. Someone more senior was called. He spent ages too. Lots of quiet voices and conferring.
Could I come back next week? Was there someone who could accompany me?
Well, of course. And yes, if necessary. Why?
“We believe your baby may have club foot.” They showed me the foot, bent round and squashed right up against the camera.
I returned the following week. I didn’t consider it a good use of Shaun’s time for him to have to come too.
I was reminded of the horse who went into the pub. Why the long face? said the barman.
“We’re very sorry, Mrs Atkins, but your baby definitely has club foot. We suspected it last week. We wanted to be sure before alarming you.”
“But surely,” I said, confused, “that’s really easy to correct, in the West?”
“Well, yes, it is.”
“So what’s the problem?”
More exchanged looks.
“Club foot is often caused by chromosomal abnormality. It’s highly likely your baby has Down’s syndrome.”
I bicycled home, the soft spring sunshine bathing my face. I couldn’t do this. I hadn’t the resources. First Alexander’s Asperger syndrome. Then Bink’s OCD. Or rather, still Bink’s OCD.
Now this.
I couldn’t.
And I had to.
“What is Down’s syndrome?” Alex asked. It was one of those sunny spring afternoons with the winter chill still on it. He and I were drinking tea companionably in the conservatory.
“You remember, in your class at Finton House...” The happiest years of Alex’s childhood were spent in the school with the Special Needs integration policy. Both before and after we realised he was one of the Special Needs pupils. Which we didn’t until four terms in, when we were invited to a party for Special Needs parents. And thought the school secretary must have invited us by mistake.
I named his childhood friend. “She had Down’s syndrome.”
“But she was wonderful!” Alex exclaimed. “Is that all?”
I will remember for ever how Alex made me feel that afternoon.
“What are the odds on the baby having Down’s syndrome?” he continued.
“They now say one in seven.”
“Well, that’s not very likely at all,” he pointed out. “I shouldn’t waste time worrying about it.”
What a wonderfully refreshing attitude my mathematician son had to statistics.
“And what is the risk to the baby, if you have an amniocentesis test?”
“Between one in a hundred and one in two hundred, depending on the hospital.”
“That,” he said emphatically, “is obviously a completely unacceptable risk. Of course you can’t.”
Down’s people are great. The chance was slim. And the test is insanely dangerous.
Alex had summed it up.
Even if it hadn’t carried a risk, an amniocentesis test would have been worse than pointless. Knowing would merely compound the issue.
I am not one of those mothers who bonds before birth: I never felt anything for any of my children during pregnancy. Nor am I a natural with disability, unlike my sister who loves caring for people. Already two of our children were diagnosed disabled.
I was now terrified of a third. Frightened of my own baby. Awful to relate, I lay in the bath regarding my swelling belly, feeling as if an alien had taken over my body.
Changing a likelihood into a certainty would render the last two months of pregnancy many times harder.
Whereas the moment our child was born, I would be flooded with unavoidable and involuntary love. It had happened every time. And love would enable me.
The irony was that amniocentesis, so late in pregnancy, could cause premature birth. With its attendant further risk of disability. My very dread, had I heeded it, could have delivered what I most feared.
At a routine check-up, a midwife happened to ask when I’d had my amniocentesis test.
“I haven’t.”
There was a horrified intake of breath.
“Oh my goodness,” she said. “That’s terrible.”
Well, thanks. That just made me feel a whole lot better...