Present Day

Too Much of a Good Thing

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My sweet son licks everything.  Well, everything except food.  My little love, who only eats 3 different foods, licks absolutely every other surface.  The furniture, the walls, the rug.  Escalator steps are a big favorite, and we were once informed by confused mall security that going up and down the escalator over and over while carefully pausing to lick each step was, in fact, not permitted.  My favorite is when he licks my face, which is his version of giving a kiss.  His BCBA once commented “we can shape that,” meaning teach him to turn it into a regular kiss instead of licking, and I thought: Not gonna happen; I love my boy’s kisses.  My standard response when strangers comment on the licking is to smile and say that he’s building an immune system.  This certainly seems to be true, as R is rarely ever sick and hasn’t required antibiotics since he was a baby.

These days, R especially enjoys going outside to lick the driveway, the road, and a series of large, decorative boulders that line our street.  I can see that this brings him joy and helps him meet a sensory need.  I cannot help but smile when I see how his face lights up, how he runs to those special spots- knowing exactly where he wants to lick.  I love his giggle when he finishes licking one spot and moves on to the next.  I love how he dashes from boulder to boulder along our street, arms and legs bouncing with excitement, jumping on his toes and down again.  But today, as I followed him through this ritual, I noticed that there was some blood on his face.  Alarmed, I pulled him over to me to check.  I saw that his tongue was bleeding.  He was unbothered by this, eager to get out of my hold and continue to the next boulder.  But it was like a little stab in my heart to see that this thing he loves so much was making him bleed.  I don’t want to prevent him doing these things he is so  compelled to do, these things that he takes such pleasure in, but I don’t want to let him lick his tongue raw and bleeding either.  This is the hard part.  Helping him find safe limits while honoring his genuine need to seek out these sensations and use them to self-regulate.

In The Tunnels

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Image by Tom Blackwell* 

I have always been claustrophobic, for as far back as I can remember.  When I was a child I was not able to reason through it as an adult can, so it was particularly painful back then.  Something as simple as being in a room with a closed door was terrifying.  We moved around a lot, and the first thing I did whenever I got my room at a new house was to plan out my escape route in the event that I got stuck in the room.  Planning how I would get out– through the window, from the window to the roof to my parent’s balcony, from there down the drainpipe to the ground– was a ritual that allowed me to feel safe in my own room.

We lived in Europe growing up.  One year, when I was 11 years old, my class took a trip to visit the old underground mines in a nearby mountain where, hundreds of years ago, miners had constructed a maze of tunnels beneath the earth.  We had to take an elevator down to the start of the tunnels, and it felt like we were going miles underground.  My fear was squeezing me tight before we even got off the elevator.  When we arrived, our teachers explained that much of the tunnel we were going to go through was too small for an adult to fit through.  The miners of so long ago had much smaller bodies than today’s adults.  We were told to follow the tunnel through to the end where the teachers would be waiting for us.  In America I don’t think this kind of field trip could ever happen, but in this particular country** it was no big deal.  I had no choice but to follow my classmates into the tunnel.  I’ve been through a lot of things in my life, but I don’t think I have ever been as scared before or since that trip through the mines.  The tunnels were so tight that in places we had to crawl and could not stand upright.  I cried silently and prayed over and over to myself, promising God anything, anything, to make it end.  Somehow it finally did.  I don’t remember much after that.  Mostly I remember the crushing fear and anxiety of being forced to face my claustrophobia in the worst way.

I think that a lot of people don’t understand what it really means to face crippling anxiety.  Someone asked me recently what it feels like for my young Autistic son.  I see them perplexed by his anxiety to things that seem harmless to them.  I couldn’t think of a good answer at the time; I’m not even sure what I said.  But on my way home I remembered the mines.  I think it must be like that.  My son is the bravest person I know.  He has to enter those tunnels every single day.  He is not able to tell me yet exactly what it feels like for him, but I think of it like this now, because I know what it is like to be afraid of something other people don’t understand.

*image by TJBlackwell see more of his beautiful photographs here

**I’ve chosen not to name the country where I grew up to protect my privacy.

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.