{"id":383,"date":"2010-09-29T13:13:50","date_gmt":"2010-09-29T13:13:50","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/09\/perfectly-human-invisible-by-mary-p-jones.html"},"modified":"2010-09-29T13:13:50","modified_gmt":"2010-09-29T13:13:50","slug":"perfectly-human-invisible-by-mary-p-jones","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/perfectly-human-invisible-by-mary-p-jones.html","title":{"rendered":"Perfectly Human: Invisible, by Mary P. Jones*"},"content":{"rendered":"


\n\"invisible<\/a><\/span><\/p>\n

My son Austen* looks like
\nmost nine-year-olds, except perhaps a bit taller, with long legs that carry him
\nswiftly across the ground as he races you to the car or the door of the house
\nor the mailbox. He has curly brown hair, golden brown skin and painfully long,
\nlush eyelashes ringing his deep brown eyes. When he flashes you a big grin —
\nas he does when he’s thinking about something funny that happened at school or
\nhis latest high score on a favorite video game — you see those new adult teeth
\nthat still look a bit too big for his mouth, like a young colt’s. His
\nfingernails have a tendency to be dirty, for the same reason the palms of his
\nhands are calloused: from swinging on monkey bars and climbing trees.<\/span><\/p>\n

 <\/span><\/p>\n

What you won’t notice
\nimmediately is his disability. It took me years to notice it myself. When he
\nwas born, I marveled at the tiny perfection of his body. Every finger and toe
\nwas intact, every limb sound. His heartbeat was strong and regular; his piercing
\ncry let me know his lungs were in fine shape. He could see, hear and lift up
\nhis head. He learned to sit up, crawl and walk perfectly on schedule. And I
\nbreathed a sigh of relief at each milestone.<\/span><\/p>\n

 <\/span><\/p>\n

But if you look a bit more
\nclosely, you start to notice a few things that seem a bit odd. When he races,
\nfor example, he runs leaning forward, his body stiff and his arms straight out
\nbehind him. And he may race away from you, frowning, when you smile and say hi.
\n(Later, he will confide in me that you are “a meanie” because you
\nsaid “the h-word,” as he calls the greeting “hi,” a social
\nnicety that continues to baffle him.) His golden skin and lips are marred in
\nplaces by little raw, bleeding patches where he has absent-mindedly,
\ncompulsively picked his skin. And that beautiful grin? He can flash it if he’s
\nnot thinking about it, but ask him to smile, as for a picture, and his fingers
\ngo to the corners of his mouth, pushing them up and providing him feedback on
\nwhat his face is doing. Finally, those hard-earned callouses are the result of
\nhundreds of consecutive recess periods consisting entirely of silent, solo
\nswings on the monkey bars and of countless hours climbing trees outside our
\nhouse, where he can see the world while escaping the chaos of having to interact
\nwith it.<\/span><\/p>\n

 <\/span><\/p>\n

Speaking was the first
\nmilestone Austen didn’t hit on time. Speech came eventually, but haltingly,
\nvery late and filled with echolalia (a tendency to repeat words and phrases
\nwithout reference to their meaning). Austen’s failure to speak when and how
\nother children did sent us to exam room after exam room, as various specialists
\neach worked backward from his behavior to the same diagnosis: autism.<\/span><\/p>\n

 <\/span><\/p>\n

Austen is not at all what
\nI imagined a child with special needs would look like. There are none of the
\ntrappings I thought would come with disability: no wheelchair, no guide dog, no
\ncane. There’s no “I’m autistic” label on his forehead. Outwardly,
\nphysically, (aside from — in his mother’s unbiased opinion — his stunning
\ngood looks, of course) he’s unremarkable. His disability is hidden in the
\nmysterious quirks of his brain and nervous system and shows itself obliquely in
\nhis unusual ways of doing, being and communicating. Those differences are the
\nreason that he climbs aboard a little yellow bus each day to make the trip to a
\nschool that has a special ed classroom able to accommodate his needs and help
\nhim learn to interact with the world in the ways it expects him to interact
\nwith it.<\/span><\/p>\n

 <\/span><\/p>\n

And those can be
\nmysterious. “Why,” Austen will ask, “is it good manners to say
\n‘bye’ but rude to say ‘I’m hanging up the phone now?'” He has a point.
\nDon’t they mean about the same thing? Isn’t the second one actually more
\nprecise? Other questions follow: Why can’t I sit on the floor of the classroom
\ninstead of at my desk? Or why can I sometimes and sometimes not? How long is
\nthe right amount of time to look in someone’s eyes? Why do people think it’s
\nsad that I enjoy doing things by myself?<\/span><\/p>\n

 <\/span><\/p>\n

I never thought of these
\nthings before Austen. I not only never questioned, but never even noticed, all
\nthe unspoken rules we live by; all the ones we’re supposed to be able to intuit
\nwithout asking (because asking would be rude or stupid). I see them now because
\nAusten’s disability lies precisely in his inability to intuit them. He has to
\nbe explicitly told. His teachers and his family are his universal translators.
\nWe have to tell him. And help explain to the world for him.<\/span><\/p>\n

 <\/span><\/p>\n

And Austen isn’t the only
\none. With autism rates alone currently at around 1 in 100, chances are one of
\nthe people you meet today will have autism or multiple sclerosis or ADHD or any
\nof a host of other invisible disabilities. They won’t look like disabilities.
\nThey’ll look like being rude or obsessive or rigid or strange or lazy or too
\nslow or too fast. They’ll look like Austen sitting high up in a tree or
\nabsently picking at his lip.<\/span><\/p>\n

 <\/span><\/p>\n

So, as Austen has
\nstruggled to master the rules, I’ve been learning my own lessons from him.
\nAbout how my expectations can trip me up, blinding me to the uniqueness and
\ndiversity of creation. Or how not everyone’s brain or body works<\/i> like mine, even when they look<\/i>
\nlike mine. I’ve seen the beauty in that moment of reaching out to say hi, even
\nwhen a curly headed, bright-eyed boy unexpectedly runs away — frowning —
\nsilent, solitary and swift as the wind. And I’ve watched the way love and
\ncompassion can rush into the space he leaves behind.<\/span><\/p>\n

 <\/p>\n

Mary P Jones* is a married
\nmother of two: 9-year-old Austen*, who is autistic, and 7-year-old Janie*,who
\nis neurotypical. She blogs at A Room of Mama’s Own. <\/span><\/p>\n

*All names are pseudonyms
\nused to protect the family’s privacy.<\/span><\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

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Her essays have appeared in First Things, The Philadelphia Inquirer, The Christian Century, ChristianityToday.com, and Bloom, among other online venues.","sameAs":["http:\/\/amyjuliabecker.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/author\/amyjuliabecker"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/383","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/users\/88"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/comments?post=383"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/383\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=383"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=383"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=383"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}