Day Two…and still no discernible difference…

Aside from some tiredness that I’m sure is the result of sleeping with his light on Sunday night and being very energetic yesterday, J seems unfazed by the reduction in medication.  Of course, it’s still early to notice a difference.  According to all my research, three days is how long it takes for the med to have an effect, so I’m going to guess that it’ll be three days before we notice if J is slipping back into any of the worrisome behavior that first compelled us to resort to medication.

While J’s descent into the emotional tailspin that altered our lives forever, and the effect the Risperidone has had on his behavior have both been gradual, this morning I was reminded of how sudden the change he experienced from the baby he was to J as an individual with Autism was.

My father recently mailed a box with old photos and other mementos, and yesterday morning it arrived with very little fanfare.  The mail carrier didn’t even ring the doorbell and it was only because I saw the mail truck go by that I told myself “oh, well…perhaps today?”  And there it was…a compact cardboard box, neatly labeled with my dad’s handwriting, waiting by the door.  Since I had about an hour until J came home from summer school, I opened it and found a jumble of old photos, documents, Christmas stockings, the kids’ baby books and so forth.  Among those items there was a stack of old negatives that I didn’t have time to look through until this morning.

Dated November 1st of 1996, a photo shows TGG proudly dressed like Mickey Mouse in The Sorcerer’s Apprentice.  No mouse ears, of course, just TGG (in all his five year-old glory) posing with his home-made costume.  Sitting next to him, looking up adoringly, is J in his stroller.  Yesterday I’d skimmed over the entries in J’s baby book, looking for a clue I might have missed in all my attempts at remembering a timeline.  One obvious fact, J was gregarious and loved his brother to distraction.  This picture shows that; a clearly besotted J looks up at his big brother, all his focus and interest directed at the boy with the blue sorcerer’s hat and the red tunic…

In every picture from that day I saw the same thing: J was THERE, he was engaged, he was in the moment.  I didn’t realize that I was doing it until I paid attention to myself, but I was crying.  I was sobbing as if I had just seen a picture of my long-lost child.  The next morning it was all different.  J as I’d known him until then, wasn’t there anymore.

Two years later a photo was taken where J is wearing the Sorcerer’s Apprentice costume while TGG is dressed as Godzilla.  TGG smiles broadly and enthusiastically at the camera, and J looks down at a piece of candy he is holding in his hands.  The only shred of enthusiasm one sees there is how closely he observes the candy because the rest of him is completely detached from the scene, as if all the other people in the photo were completely inconsequential, as if they existed in another plane.  Year after year, pictures of groups of people where J looks as if he’s not even there, or he’s off in the distance, the background…there, but not a part of anything that is being focused on by the camera.

Grief, redefined.  I didn’t know I could feel this, what with all my “little engine that could” mentality…I don’t think anyone (other than those in the same proverbial boat) can get what this is like.  When I was a young bride, I miscarried at about four months into my first pregnancy; every year since then I’ve quietly observed the date, a banner of guilt flying above my head because my body was not efficient at completing a task it started.  It never occurred to me, until recently, that I wasn’t meant to be that particular child’s mother because I was meant to be J’s.  I had told myself this, you know: “well, if I’d had that baby girl and then TGG, I would’ve stopped at two.”  I had never thought I’d never had J, this person that fills every corner of my existence so well, and so completely.  This morning, when I saw J’s face on that long-ago November, I realized that HE would have been gone, even more gone than when the Autism redefined him.

See that?  J didn’t disappear.  J was redefined.  I was redefined.  Sometime in the middle of that night, something happened somewhere deep inside J’s brain and we all woke up to a new reality and endless, unknown, strange possibilities.  From that moment on, little by little, J kept pulling farther and farther away from everything around him, and now he seems to be coming back…never completely, never fully, but closer than he had been in a long time. The same face that smiled at the camera that day is here, with the same gleam in his eyes, and a lot more hair on his face…

Now, if we could just get that WITHOUT the med…not perfectly, not pristinely, just J as he is without the overwhelming circumstances that seem to weigh him down to the point of desperation.  Let’s see what happens as Day Three approaches…

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