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.   

I want him.

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After a tough outing the other day, I was thinking, as we drove home, how much I wish there was a magic pill to cure my son’s anxiety.  I was nearly salivating at the thought.  I would cure his anxiety in a heartbeat.  But I have always been in the camp of parents who don’t want a “cure” for his Autism.  And before you accuse me of saying so because I must have a “mild” kiddo I’ll disclose that R is very impacted by his Autism.  He carries a level 3 diagnosis.  He is not “mild” on the spectrum.  He is less abled than the large majority of his same age Autistic peers.

But here’s the thing:  Autism isn’t just the sum of his challenges.  Are there things I wish I could change for him?  Things I would “cure” for him?  Absolutely.  Would I be willing to re-write his entire neurology, personality and all, to achieve that end?  No f’ing way!  Autism is so much more than just the sum of his challenges.  I see Autism when he smiles and giggles, reaching out to touch something my eyes have missed.   I see it when he moves his body in joyful, wondrous rhythms.  It’s in the fact that he has, in his 3 short years, never tried to deceive anyone, never once acted with malicious intent, no matter how angry or frustrated he might be.  It’s how he is the happiest, most cheerful child I’ve ever met despite the hardships he faces.  I look at his beautiful smile, his whole body bursting with joie de vivre, and I think: this is Autism.  This is as much Autism as any of his challenges.  This is who he is.  I don’t want a different child.  I want him.

Beginnings

Maybe I’m reading too much into it, but it seems all of my children’s births have been demonstrative of the personalities they went on to reveal.

My oldest came on time, but did not come easily.  Labor started just a day past my due date, but was 36 hours long, a good length of that stalled at 8cm, and fraught with periods of dangerous drops in heart rate.  Near the end he did not recover from one such drop in HR, and we were rushed to the OR for an emergency C-section.  Before the doctor started cutting, his HR stabilized.  We all waited silently to see if it would stay that way, and finally the doctor declared that I could try pushing, since I was 10cm by then.  They took me back to the birthing room and I pushed for the next two hours.  Finally, finally, my little boy emerged, head bulbous and screaming with indignation.  He was the most beautiful creature I had ever laid eyes on.

Like his birth, my oldest son has always been a worried, nervous child.  He drags his feet, heels dug in, at difficult tasks.  He is concerned about new things and what is happening next.  But in the end he stays the distance.  He’s thoughtful, sensitive, and loyal.

My daughter’s birth was a whirlwind.  Like her older brother, she too was right on time.  Prodromal labor started at 11pm the night of her due date.  Active labor started at 1am, and she was in my arms by 2.  We nearly had her in the street, and as it was, we only made it into the exam room of our birthing center, missing the gorgeous birthing suite with jacuzzi tub altogether.  She arrived ten minutes after the sleepy, harried midwife fumbled to unlock the doors in her nightgown.  My daughter is an unapologetically loud, passionate, and fearless child.  She eagerly dives into to new situations with 110% energy every time, just as she did with her birth.

My youngest too had a birth befitting his character.  It feels like some aspects of his Autism were present from in utero.  He has a very hard time with change, and a great deal of fear and anxiety in new environments.  So in retrospect it should be no surprise that he was determined not to exit the womb.  Unlike my other two who came right around their due dates, R was 11 days late, arriving at 41 weeks and 4 days.  I think he may have stayed in longer if I hadn’t tried every “natural” induction method google had to offer in the days before his birth.  We had a homebirth with midwives, so medication was not on the table.  My labor with him was extremely painful, unlike my unmedicated birth with my daughter, and the unmedicated portion of my birth with my oldest.  Having given birth twice already I was not anticipating that.  He had a very hard time descending into the birth canal until finally my midwife reached in and adjusted his position then used her hand to push my cervix aside while instructing me to push.  With her help he finally slipped into the birth canal.  When he came out he did not cry at first, though he was breathing just fine.  He was a very calm, quiet, and easy baby.  He was born in my bed and stayed there with me for several days.  When I was finally up for moving about more, we noticed that he cried whenever we took him off of our bed, but was calm and content as long as he was on that bed.  At that time his whole world was that bed, and he became upset whenever he was asked to explore beyond it.  Slowly he grew to expand his world to include the rest of the room, and eventually the rest of the house.  As he got older, we could not take him new places without having him snuggled into my breast in a carrier.  If I tried to remove him from the carrier he would wail.  We would go to fun places, like mommy & me playgroups, play spaces, and playgrounds.  I would see all the other babies his age crawling away from their mothers, interested in exploring the objects and environment around them.  R just wailed and wailed if I tried to remove him from his place against my chest in the carrier.  But as long as we were home or in a very familiar environment he was the happiest, easiest baby.