Akiva and the Missing Glasses: A Never-ending Story of Disability and Vulnerability
Now, where did I leave you?
It was early June when in the space of one week, 2 pairs of Akiva’s glasses went missing.
The story has continued in amazing, astonishing and mystifying ways.
BEFORE YOU READ ANY FURTHER, please don’t tell us to get him glasses with straps – been there, done that – or to get his glasses personalized – we have – or tell us he’s a candidate for LASIK surgery – right now it’s not on the table – or that he should have contacts – if you’d like the job of putting them in and removing them, but know he’s not a candidate.
Akiva and his glasses – previous pair
HOW IT ALL BEGAN: Two pairs of glasses gone in a week. One pair went missing at school. One pair went missing at Shalva.
DIFFERING REPORTS: What really happened and when the missing glasses were first noticed as gone.
STRANGE MOMENT: One month later, 1 pair reappeared only to go missing again a week later.
THIS WEEK: We swapped him into a cheaper $80 online spare. That pair was grabbed and broken by someone yesterday, at Shalva.
GLASSES COUNT: That’s 3 glasses in 6 weeks.
ALSO THIS WEEK: Ira put on his detective hat and went and chatted up the afterschool bus drivers. The bus and what happens on the bus, is of course, a black hole. One driver said, “sure I know Akiva wears glasses.” Ira inquired if he’s ever found a pair on the bus, and believe it or not, he went and fished up a pair saying who’s are these? Guess what, They’re Akiva’s but an older pair from who knows when. Can you imagine? The bus driver never once asked at school or Shalva, or the children and teens on his bus, if anyone recognized the glasses.
SAID BY STAFF: Now we know to check Akiva when he comes off the bus. That’s because we’ve never discussed this before? And what happens in September, that is if I’m not in jail by then, when you have complete staff turnover as you do each year?
SAID BY OTHER STAFF: These things happen.
The facts as we see them.
AKIVA’S FRAMES: Akiva has worn the same frame for some time as it’s easy to replace online and fits him reasonably well. And, they have his name on them. Ok, it’s in English but seriously. He does occasionally wear another style – yes, they have a strap and yes, that doesn’t matter.
AKIVA’S VISION: Akiva is -9, or 20/1000! He’s significantly nearsighted. Measuring his sight is done passively, but we’ve seen, as he grew accustomed to glasses, how much they help him see better. Yes, people with Down syndrome are often over-corrected but we see that he does need some kind of correction.
Akiva also has strabismus (he’s cross-eyed), and nystagmus (rapid eye-movement, now much better), and has had corrective surgery (as have all 3 of our children, as it runs in the family).
GLASSES COUNT: We estimate 17 pairs. Since 2006, when we moved to Israel, we’ve ordered glasses online, through a few local shops in Jerusalem (1x a year we get a Maccabi discount), and through our cousin the optometrist (good glasses too high a loss factor).
What’s next? Don’t know.
By Beth Steinberg, Shutaf co-founder July 2017