Mercurial and ever-changing Autism

“Never say never, for if you live long enough, chances are you will not be able to abide by its restrictions. Never is a long, undependable time, and life is too full of rich possibilities to have restrictions placed upon it.”

~ Gloria Swanson

 

When my son was about three years old, we spent the night in the hospital for a video-monitored EEG.  The EEG was actually ancillary to the reason we were in the hospital in the first place as he had been very ill with some sort of gastroenteritis and was very dehydrated to the point of needing intravenous fluids.  This was not our first hospital stay; my son was born extremely prematurely ans spent the first 209 days in the neonatal intensive care unit (NICU).  He has gone through more surgical procedures than most people endure in a very long lifetime.  Thus, he is no stranger to the invasive procedures inherent in a hospital stay.  He is also a trooper, putting up with things most of us would whine about.

On this particular stay, he suffered the indignities of being swaddled into a papoose board to allow the EEG technicians greater access and cooperation for placing the leads.  If you’ve ever had an EEG, you know the leads are numerous and the goop used to hold them in place is sticky.  A twenty-four hour EEG in the hospital is worse; the leads are held in place with the medical equivalent of model airplane glue which is dried with a hair dryer.  Did I mention, there’s somewhere in the neighborhood of twenty electrodes or more used for an EEG.  Did I also mention that my son hates to be restrained in any way?

My poor boy fought so hard that he actually got a hand free from the swaddling —ripping out an IV line in the process.  He never said a word through it all.  (Why would he?  He’s nonverbal.)  He kicked and screamed to bring the house down but he never said a word.

The following morning, my indignant child —who also was unable to stand on his own at this point in time— badly needed a bath.  His hair looked like it had been styled with an egg beater and glue and there were smears of dried blood on his arms and torso.  One of the very kind nurses offered to let us use the bathtub in the therapy room because it was big enough if I needed to get in with my son; it was our first time ever trying a bath in a real tub.  Nik was small enough that we were still using an infant tub at home for the convenience and security; his trunk control wasn’t strong then and we feared he might topple over in a regular tub so we’d simply never tried.  Despite the larger tub, I was fairly confident that this would be a simple enough procedure as my boy always loved bath time.

Never was a mother’s intuition more wrong than that morning.  The moment I placed my naked, filthy child in the tub —just to let him feel how it was different from his tub at home (and with no water in it yet)— he catapulted himself  to  a standing position holding on to the side of the tub and said screamed the first and only word I had ever heard him utter. “NO!”  The nurse chuckled and said “I thought you said he doesn’t talk.”  “He doesn’t,” I stammered.  We spent the next hour trying to calm him and clean him up as best we could before heading home. 

* * * * * *

Time is a great equalizer and many things have come to pass which we never thought we’d see.  My son began walking shortly before his fourth birthday.  In the blink of an eye, Nik seemed to go from a non-ambulatory child to the fastest of runners and most agile of climbers.  He even learned to love the water again by spending countless hours in my sister’s swimming pool over the intervening summers— many of those hours spent screaming and clinging to me or Niksdad.  He’s even learned to like baths once more and would be happy to play in the water long after it’s turned cold and his fingers and toes have gone wrinkly.

But, seriously?  Nothing could have prepared me for yesterday.

* * * * * *

It was an unseasonably warm day filled with tremendous noise and disruption which kept Nik off-kilter all day.  A crew was working to replace the roof on our home; it was noisy and the house had been tented to protect it from the debris being ripped off the roof.  Nik’s usually quiet, bright play area was anything but.  Despite it all, Nik seemed pretty sanguine about it all— at first.  As the day wore on, we could sense the tension in our son though we would have been hard pressed to identify anything more specific.

  Niksdad spirited Nik away for some quiet time at the park.  Despite Nik’s apparent imperviousness to all the noise, we could tell the disruption was taking a toll by the way he was perseverating on specific things which he hasn’t for a long time.  It was definitely time for a getaway! 

Despite falling asleep in the car on the trip home from the park, Nik was in better spirits when they returned.  He was also badly in need of a bath.  My husband removed Nik’s shoes and orthotics in preparation for “the b-word.”  “Are you ready to go take a bath, little buddy?” Nik squealed (nearly a shriek!) and began to dance in place like an excited pony.  Then, he bolted from the room, making a beeline for the stairs.  He paused just long enough to grab his daddy’s hand to pull him along.  My six-foot-one husband had a hard time keeping up.

It was one of those rare moments when so many things come together in an instant, so many skills taken for granted:

* comprehending the question
* motor planning and coordination
* desire to share the experience (of the bath)
* recognition of that desire
* appropriate interaction to request company
* expressing emotion appropriate to the situation

I wish I’d had my video camera at the ready.  Instead, all I could do was laugh. 

And marvel.

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