April 10, 2011
SLAM!!!!! Zach and I jump a bit as we’re sitting at his art table, and I quickly smile both to hide the fact my heart has briefly stopped, and that I am completely exasperated. It is, perhaps, the THOUSANDTH time Justin has slammed the closet door this afternoon (okay, slight exaggeration, but it FEELS like it), and my patience is frayed to its ragged, disintegrating ends. Zach asks “What is Justin doing, Mom?”, and I reply “organizing his toys, hon”, but secretly, I admit to myself I really have no idea. While the lion’s share of the playthings from the closet have been exiled to the garage recently due to Justin’s escalating OCD, he has still managed to find something in there to rearrange- namely, his plush toys. Although the positions we have discovered them in have been mildly amusing to me and his father, our overriding emotion upon witnessing this returning obsession has been dismay, and sadness.
For so long, he had been doing so well.
Over the years, as I’ve spoken to people about my eldest son and his neurological disorder, I’ve found most conversations end up centering around his lack of speech, and how difficult that must be both for him and our family. While I don’t want to minimize this deficit (believe me, there are many days I wish the child could just TELL me why he’s rivaling my PMS-state), it certainly has not been his greatest impediment to functioning in the “real world”. Even the aggressive moments that plagued us, his therapists, and his teachers over the years were scattered enough to be “livable”, until the end of his sixth year when the incidence increased so greatly we sought the assistance of medication for him.
Although the non-verbal aspect of his autism and the pinching have both been considerably daunting, the single greatest component of his disorder that affects his life the most is the OCD/ perseveration. It’s what clued me in at his six month birthday that something was amiss (when your infant chooses to spend his entire day spinning a faux fish bowl throughout the hardwood floors of your home, it’s time to contact that developmental pediatrician). His predilection for rotating objects, rearranging photos around our home, or hiding one shoe from a pair in absolute obscurity (his mother’s personal favorite) prevent him from engaging in more appropriate pursuits, effectively limiting his world to a minimum of activities.
There are mornings when I almost have to carry him out of the house to get him on the bus, and not because he doesn’t want to go to school, because he’d live there and marry his teacher if he could. It’s simply that the random pattern of paper slips, and oft-ignored Xeroxed reminders on our chaos of a kitchen table are not arranged to his liking, and he can’t leave until they are. Perhaps it is that I have erroneously placed a new photo of he and his brother in the family room, rather than mid-way upon our living room bookshelf at an angle that is just so. After all these years I still cannot discern the precise patterns he is striving for, and his penchant for order is enslaving him. There are many days his closet machinations would leave him in tears if we weren’t constantly redirecting him, in our own attempt at ritual.
There are as many days that little face, desperate in his desire to get it “right”, engenders tears in me as well.
The thing that brings me and his father most to despair, is that the OCD comes in cycles, is stealthy in its resurgence. It’s only been the last six months or so that it’s escalated to this level once more, and once again, it doesn’t seem to be precipitated by anything in particular. In the past, it seemed to be high fevers that heralded the return of the full body tics and desire for order that would consume him for a few months, then dissipate. Since he had those glorious ear tubes inserted last fall there have been no fevers, no antibiotics, no palliative measures taken to address the always-accompanying upset stomach that perhaps were the triggers to his obsessive state. Despite all the progress he’s made socially, academically, and emotionally, this bane to our existence, this barrier to his happiness, is simply back.
Of course, we’ll address it to the best of our abilities. We’ve found a new neurological pediatrician with whom we feel more comfortable (and yes, if you’re wondering, she has a waiting room). Jeff and I felt she really listened to us at our first visit, was open to the suggestion we’ve been hearing from several professionals in Justin’s life that he might have a dual diagnosis of both autism, and actual OCD. She’s willing to think out of the box a bit with medications, comprehends the limits of a therapeutic approach, and understands we have thoroughly explored the tenets of ABA to alleviate his suffering. There is even the possibility of enrolling Justin in a study someday, if we collectively feel it will be to his benefit. We’ll return to see her in a few weeks time, and I feel confident all options will be evaluated, that he is in good hands, that my boy is receiving the best care possible.
But I can’t help wondering, if despite all our attempts to quiet the sometime chaos of his beautiful mind, if this is as good as it gets.