We aren’t experts. Something told us that a few days ago. After almost four years of caring for a child with Down syndrome we’re still having surprises.
One of such was the moment when Amos explored a halogen bulb with his bare fingers. Its radiant heat alone was melting the scented wax underneath it.
We yanked him away, of course, though not in the nick of time. In an hour the blister appeared, large as the fingernail on my pinky. That evening it popped, and the next day the wound turned rather hideous.
For an experience that would make a grown man flinch, Amos was stoic the entire way. There was neither a grimace nor a tear. He watched us clean and dress the wound and there was the usual curious spark in his gaze. Occasionally he’d even pick at it.
Amos felt nothing. It never occurred to us that Amos should be suffering from some form of sensory neuropathy associated with his hypotonia (low muscle tone). We had noticed his tolerance to heat when he fingered a steel pot of hot soup as if it had merely warmed his hand. But the halogen feat was superhuman.
A consultation with experienced mummies revealed similar cases. And as it turned out, education was key. We had to teach Amos the effects of temperature and in general, to associate heat with danger.
There wasn’t any intimation prior; nothing whatsoever to suggest Amos’ extreme insensitivity to heat. He dodges our attempts to press a chilled drink to his cheek. Like his brother he responds explosively to tickles. So it was down to his fingers—just the fingers.
Can you imagine that?
We’d like to think they are superhumans but we aren’t out to romanticise stuff. There are people who suffer from insensitivity to pain and that’s dangerous. We recognise challenges and we try to overcome them. But the attempt to comprehend a sensory spectacle like that blew my mind. And this might only be the tip of the iceberg.
So who exactly are they?
What’s going on behind this extra chromosome which gave them challenges and yet lovely, humane traits we are scarcely living up to?
I’ve written a fair bit on them so I’m not going to bore you with them. Instead I’m going to give you three simple questions to think about.
1. Have you heard of any criminal who has Down syndrome?
2. Have you seen someone with Down syndrome beating up someone else?
3. Have you ever met a bigot or a racist with Down syndrome?
I’m not digressing. I believe this is where we start digging deep. The mental capacity of people with Down syndrome ranges from that of a 4 year-old to an IQ of well over 70, sufficient in all aspects to hold jobs and lead decent, independent lives.
Sufficient for hate, for violence.
It isn’t the level of intelligence that matters, so it isn’t tenable to say that people with Down syndrome aren’t smart enough for these things. And if your answer to all those questions was ‘no’, then you’d be pleased to know that according to the Global Down Syndrome Foundation there could be over 6 million people with Down syndrome living in this world.
6 million.
Even if we should find a single recorded, convicted criminal with Down syndrome this statistic falls short of ours by light years.
How fascinating is this Special Community?
Maybe—just maybe, they’ve been put out here to show us the way we should all behave.
"As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, the Maker of all things." Ecclesiastes 11:5
Photo credit: Fmosca via Foter.com