Early months

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He wiggles his fingers in front of his eyes while rotating his wrist back and forth.  He’s been doing it since he was 6 weeks old, perhaps younger.  We love that it is so “him;” one of the many little things he does that our other children never did, that we never see our friends’ babies doing.  He’s so unique, we say.  He’s our quirky guy.  He is 6 months old.

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He deliberately bumps his forehead against the wall then rubs it down the wall.  He does this over and over.  It makes loud buh-bump-buh-bump-buh-bump noises.  At first I am alarmed.  “What are you doing, buddy?  Be gentle!”  He doesn’t react to my voice at all.  I wonder again if he might be deaf.  We never had the newborn hearing screening done.  I copy him, bumping my head against the wall pretty hard, then dragging it down.  It doesn’t hurt, so I figure it must be ok for him to do.  He continues and it strikes me how funny he looks doing it.  I giggle and pull out my cell phone to record him.  I take a few minutes of video, giggling at his quirky antics.  He is 9 months old.

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He holds a tinker toy rod in his fist before accidentally dropping it.  He goes to pick it up again but becomes distracted by the sight of his own hand.  He changes course mid reach, slowly bringing his hand in front of his face and watching his fingers move.  He moves his hand up beside his temple and opens and closes his hand over and over while he watches in his peripheral vision.  The nurse calls our name.  In the exam room the doctor begins describing the developmental milestones expected for this age.  I tune her out, having done this with 2 other kids before and expecting, as always, that it is a bunch of “yes, yes, yes”s I need to confirm so we can get to the good part- the physical exam and seeing his growth chart.  At first I say “yes” several times before my brain realizes that there have been at least 3 that I automatically said “yes” to that were actually “no’s”.  I don’t tell the doctor, but flustered, I start paying more attention, and say no to over half of the remaining questions.  I ask the doctor if that is still normal, and she assures me that every child develops at their own rate.  I put it out of my head.  He is 12 months old.

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“Here’s what we will do,” I say. “You take him in the other room and I will start his video at the lowest volume.  I’ll gradually add volume.  You watch to see if he notices the sound.”

“Okay,” my husband agrees.  “Let’s do it.”  We do.  As soon as I increase the volume to a level that would be audible from outside the room, R runs in, bee lining for the computer where his video plays, a huge smile on his face.  

“He’s not deaf then,” I announce uncertainly.  I wonder why he doesn’t respond to his name or look at us when we are loudly trying to get his attention.  I google “autism,” but quickly close the page.  My son couldn’t have Autism.  Stuff like that happens to other people.  We are just your average boring family.  I tell myself it is probably a 3rd child thing.  He is 15 months old.  

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I can’t ignore that something is different any longer.  I look at R, who is putting the tinker toy rod piece through the circle piece over and over.  This is his only play.  He does not play with any toys at all, except these two tinker toy pieces, which he must always be holding, and with which he performs the same action on repeat.  He doesn’t have any words.  He doesn’t point or follow a point.  He doesn’t wave or clap.  He has stopped making any eye contact at all.  He doesn’t understand anything we say to him, and he doesn’t respond to vigorous attempts to get his attention.  He doesn’t seek us out for help or play.  If he wants something he stares fixedly at it, never looking from the item to us to let us know what he wants.  If he can’t get something he wants he just cries, never trying to get our help first.  He does not bring us things or show us things.  Unlike our friends with a child the same age, we have not had to baby-proof at all.  R doesn’t get into anything.  He has no interest in opening cabinets or drawers, taking or dumping things, exploring toys or objects.  He does none of that.  He will sit and trace the bolts on the cabinet with his finger, but never open the cabinet.  Instead of playing he does things like scratch textures- the upholstery, blankets, sheets, the rug.  He still wiggles his fingers in front of his eyes all the time, and does several other strange hand movements.  He is very fascinated by his hands.  Autism, a voice whispers in my mind.  No, I think, it can’t be, because despite everything else he is very attached to me, very sweet and cuddly, loves to be held and hugged by me.  He giggles and laughs all the time.  I’ve heard kids with Autism are detached and aloof, that they don’t like to be touched (this, I will later learn, is a common myth).  Still, I begin googling in earnest.  I come across the M-CHAT, an Autism screening for young toddlers between 16 and 30 months of age.  He scores a 17 out of 20, 20 being the highest possible risk score.  The webpage advises that he is at “very high risk” and should be assessed immediately.  I call his doctor.  He is 17 months old.   

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