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Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” “It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …

Make a wish

Recently we received a visit from the Make a Wish Foundation, a charity that provides special experiences for children with life-threatening illnesses.
To map the contours of Asa’s “wish,” two women from the foundation quizzed him on his tastes, preferences, and ambitions. 

Asa's ambition is to be a pilot or a truck-driver.

Unfortunately, neither driving nor flying will be open to him as careers. In the UK, drivers have to have at least 6:12 vision (equivalent to reading a license plate at 20 metres). At present Asa’s vision is 3:60 in the right eye and 1:60 in the left. On this basis, he’s been certified as ‘Severely Visually Impaired.’ 

On some versions of the certificate those words are followed by “(Blind)”.

But blind he isn’t. 

The law defines these things liberally. While visual ability varies along a spectrum from species-optimal to complete absence of light perception, British law has only two categories of impairment: Impaired, and Severely Impaired. So Asa, with his very impe…

Whipping out the wiggly

Little big man

Raising a child with visual impairment makes you see the world differently.
At dinner with friends the other evening, I was astonished to see Asa’s best friend Angèle, who’s just a couple of months older than he is, watching TV from across the room.
What’s so strange about that?
Well, for Asa to see what was on the screen, he would have to stand within arm’s reach of the television set.
That had come to seem normal to me.
That may sound weird. But consider some of the other characteristics that we accept as natural for toddlers: short stature, primitive grammar, a predilection for tantrums. And their special, compensating features -- a mania for play; an exuberance that’s almost never found in adults.


The fact is, I’d gotten used to Asa not seeing as we do -- just like I’ve gotten used to him being smaller and livelier and having chubbier cheeks. And sometimes I forget that other children don’t necessarily share all of these traits.
The normalization of abnormality is part of a process of…

Discovering poetry

The child does not exist who, between the ages of 2 and 5, does not display a predilection for poetry.
I stumbled across this quotation yesterday in a notebook I'd kept a few years ago -- copied from a text by the Russian writer, Kornei Chukovsky.
It seems apt, because just this week Asa's started rhyming.
We were sitting on a sofa in our hotel in Birmingham on the night before his last medical exam when, à propos nothing, he came out with two words that rhymed.
"What about, head and bed?" I asked in response.
"What about, light and tight?" he rejoined.
We kept the game going for a while. And since then it's become a regular way of passing time.
The fact that children should invent (or discover) poetry as a matter of course, as they learn to speak, is amazing to me.
Of course, Asa's been exposed to rhymes -- in books likeYou Are My I Love You, and in songs.
But how readily he makes the idea his own!
And this is really part of a whole bundle of discoveries t…