April 10, 2011

Resurgence

Posted in My Take on Autism tagged , , , , , at 8:15 am by autismmommytherapist

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.

June 16, 2010

Force of Habit

Posted in My Take on Autism tagged , , , , at 9:41 am by autismmommytherapist

Lately, I’ve been spending a lot of time in the closet.

I’m not contemplating a late-in-life team change, although the opportunity for round-the-clock conversation and shopping is enticing at times. No, I’m talking about my son’s latest OCD/perseveration habit. This newest exercise begins with Justin escorting the nearest adult (usually me) to our pantry-cum-toy-closet with a giant push to the small of the back. It terminates in him shoving a faux laptop/plush toy/musical instrument into my waiting hands, vaulting my arm toward the desired space on the correct shelf in the pantry, and then him waiting to see if I can discern the exact angle in which to replace his discarded object correctly. This has been transpiring for a few weeks now, is conducted several times a day when I can’t get him (or some poor unsuspecting rube) to act as my body double, and is an activity I find to be soul-grindingly irritating.

We’re working to rectify the situation of course (that is, when I’m not trying to get both kids on their separate busses in the morning, vehicles that invariably show up within seconds of each other as I stand at the end of my driveway pretending I can still discern the tiny numbers inscribed on the side of each hurtling yellow savior). Most of the time I can instruct Justin to replace the offending item himself, and after I’ve blocked his arm from my coccyx region several times in rapid succession he gets the picture, and dejectedly runs to toy heaven. If that doesn’t work, I can often just gesture toward the waiting shelves, and he’ll get the hint. Sometimes, when pointing and verbal prompts don’t do the trick, I have to physically move him there myself and command him to appease his own obsession, which he often does. I am committed to breaking him of this habit, as I have so many other annoying ones in the past.

And sometimes, when I contemplate what I’m doing, I feel like a big, fat hypocrite.

Over the years, I’ve asked my son to change a lot of his deeply ingrained desires. There was the potty training year(s), where I required my oldest child to stop watering our Berber carpet with his urine two dozen times a day and instead relieve himself in the apparently offensive toilet bowl, a habit which almost tipped the balance in his mother between social drinker and full-blown alcoholic. There was the pleasant habit of his screaming every time I tried to strap him into his car seat from birth to two (except for when he was an infant and slept in it, a habit we thought we might not break until he hit puberty). There was of course my personal favorite, the “pinch the first living thing within reach when denied my way” habit, which I’m proud and grateful to admit his family, teachers and therapists have predominantly exterminated, mostly due to our collective adherence to saying “no” and meaning it.

There have been many undesirable customs over the course of his lifetime, and I’ve made it my mission to stamp out the most heinous whenever possible. Of course, it’s occurred to me that many of these habits are only annoying to those in close proximity to Justin, not to Justin himself. Sure, some of them would prevent him ultimately from integrating himself into society in some fashion, but most just annoy the crap out of his parents. Essentially, on many days, I’m asking him to change to save my sanity, not to better his life per se.

Truthfully, on most days I’m not worthy to ask him to modify his behavior in any way, shape or form. If I had a dollar for every time I’ve sworn to reduce my daily dark chocolate intake (hah!), or said I’d clean up the piles of paper and useless junk I swear reproduce like amoebas on my dining room table, or followed through on my promise to rid my car of garbage that has taken permanent residence since American Idol was still a compelling show, I’d be a wealthy woman. Perhaps I could afford that state-of-the-art group home for adult Justin after all.

Truly, most days I can’t shape my own behavior to save my life.

So, I’m still going to try to exterminate these undesirable routines, the ones that set him apart and grate so noisily on his mother’s last nerve. I’ll attempt to at least reduce them, to employ my knowledge of behavioral techniques so that his actions are more “acceptable”, more mainstream. I’ll try.

But I’m also going to summon a little more compassion for whatever it is in his brain that compels him to do these things, and remind myself that he’s not doing them to evoke a “nails on a chalkboard” reaction from me, that he’s just enacting these behaviors because to him, it feels good. It’s not about me.

It’s never usually about me.

I’m also going to remember how often I fall short in molding my own habits, how so many of my desired regime changes go out the window annually by Valentine’s Day (if I make it that far). Research shows it can take hundreds of trials to alter behavior in a neurotypical human, and perhaps thousands of attempts to shift behavior in autistic ones. What I’m requesting him to do is really difficult, particularly because I’m quite certain he has no understanding of why the action is offensive in the first place.

So, I’m going to give increased compassion toward Justin a valid shot, and perhaps one day I’ll really tackle those procreating piles on my beleaguered dining room table instead of sneakily stuffing them under the buffet when guests come.

Wish me luck, and don’t hold your breath.

May 4, 2010

Morning Unglory

Posted in Life's Little Moments tagged , , , , at 11:06 am by autismmommytherapist

Today, autism can bite me.

This sentiment had its origins in my 4:00 AM wake-up call, when I heard my husband enter our oldest son’s room down the hall. I listened to him make a vain attempt to try to quell the sounds loudly emanating from my firstborn, noises that reverberate around the upstairs despite the sound sleep, fan, and air purifier we employ so the white noise will enable our youngest child’s slumber to remain undisturbed. Jeff and I have a pretty good routine worked out, where he does middle of the night duty and sleeps late in the morning, and I do crack of dawn and try to get a solid eight by turning in early. This used to work for me when I was able to return to unconsciousness in the wee hours, but as middle age has set in I’m finding this sleep surrender to be an increasingly difficult endeavor. In this regard, I truly mourn my youth.

I acknowledge this is one of those nights I won’t be returning to fantasies of Clooney (at least unconscious ones), and I sigh, go to the bathroom, then open our bedroom door slightly, and assess the situation. I see a slightly damp pair of footie pajamas slung over the gate at the top of the stairs, and realize that we probably gave our son too many liquids before bedtime, and he has overreached the boundaries of the pull-up he still wears at night to prevent these situations from occurring. By this point my son has been returned to bed, as has my husband, and the cacophony of “ee” has mildly abated. I doubt Justin will be able to return to sleep. I doubt his mother will either. I am correct in both assumptions.

I give up the ghost at 6:15, and drag my sorry and tired body out of the warm cocoon of my bed to begin the two hours of child care required before my son blissfully gets on his bus and journeys off to his full-day autism program. As I head towards his room I steel myself, because the days when Justin doesn’t get multiple cycles of REM sleep mean an increased incidence in his perseverative and impulsive behavior. When I’ve had a decent night’s rest I can usually take it in stride. When I haven’t, I know I’ll be annoyed with him by 6:30.

I am certain this is one of those days.

It begins with his indecipherable need to enter his brother’s bedroom a good hour before his highness needs to be awoken, and I’m simply not permitting this breach to occur. We struggle outside Zachary’s door, Justin’s vowel repertoire ramping up by the minute, until my sleep-deprived brain recalls there is a perseverative toy on the counter in the bathroom. If I can hang onto one arm and position the rest of my body correctly, I can reach my prize without losing my iron-clad grip on his thrashing appendage. I manage to do so, a veritable miracle for the least flexible person on earth. As soon as he makes visual contact he grins ear to ear, and marches placidly into the bathroom to pay his visit to his porcelain friend.

It’s 6:27, and I’m already sweating.

Our next battle ensues as I attempt to get him to put on his socks, articles of clothing he has worn many times before, which today are apparently utterly offensive to him. I concede this battle, run to his room and fetch another pair before he can dart into his brother’s room, and am rewarded with a smile. Clearly, these are the only appropriate pair he can wear today.

I am grateful for the purely mild scuffle in which we engage at the end of the hallway, as my son who usually placidly descends the stairway to his waiting breakfast has today decided this would be an excellent opportunity to disturb his exhausted father and play on the computer. I manage to corral him through the gate and gently propel him downward with only mild protests. This one, I win.

Within minutes he is sequestered in his special chair, the one with the tray we believe makes him feel more secure when he’s eating the meals we at times have fought so vociferously to force him to ingest. At his third bite of waffle he gags, a pleasant event which he is prone to during allergy season as he contends with his pervasive buddy, post-nasal drip. The waffle remnants fortunately land on his tray, save for one half drop of saliva that penetrates his shirt. I pray he won’t notice it. He does. This transgression of food-oriented effluvia requires a Madonna-like outfit change, the need for which he indicates by releasing his tray, standing next to his chair, and stripping out of his entire outfit in the middle of my kitchen floor. Yes, the socks too.

It’s 6:48.

I run upstairs like a madwoman, reconstruct a new ensemble, and dash downstairs before my son can propel his naked body over the downstairs gate he has recently, to our great concern, learned to surmount. I practically vault over the obstacle myself in Olympic imitation, and get to him before he’s even lifted his foot over the summit. We’ve made it this far. I’ll be damned if he wakes up either of my boys upstairs.

He redresses, manages to keep down the rest of his breakfast without incident, and takes his plate and fork to the sink in a ritual he has mastered for years. I begin to wash up his cutlery but am interrupted by a hard jerk to my arm. I turn, regard his intense look, and with my peripheral vision take in the gaping door of the toy closet, and know immediately what he requires. When Justin’s OCD is in overdrive, nothing will placate him but the precise placement of every single one of the spinning, musical toys we employ as reinforcers for good behavior. Everything not only has its place, but must be positioned at a particular angle that only my son can discern. Usually I can redirect him to a more productive activity, or get him to do it himself. Not today. I tell him I’m coming, and in my tired condition forget to block what comes next in his newly acquired perseverative repertoire; the giant shove in the back to propel me toward the toy closet, just in case I haven’t understood his needs.

I stumble toward toy mecca. I am regretting my need to procreate.

It is 6:59.

We spend almost ten minutes together arranging, rearranging, adjusting, as I endeavor to placate him so I can tend to my youngest son, get them both on their respective buses, and the hell out of my house. I decide to conclude my morning routine with Justin to get all the fun completely over with, and manage to shove him into the bathroom for one last attempt at the potty. I don’t have the patience to wait for him to immerse his feet in his third pair of sneakers in almost as many weeks, so I shove them on, and hope for a break. They’re soon discarded, and I am rewarded with a look of utter disdain at what I’m guessing was the inappropriate placement of the Velcro on his precious extremities. The sneakers return to their appointed position. They are rejected again. This time I plead, I beg, I implore, I promise Disneyworld someday in the future if he will just don these damn shoes and go to school. He takes pity on me and permits their passage, and I remark to myself that the offending straps are not in any discernibly different place than they were the other three times I secured them.

It’s 7:06.

I recognize that all children are intensely irritating (some most of the time). After teaching for a dozen years I was stripped of all illusions concerning their personalities, their bossiness, their need for order. My personal belief is that all small children suffer from schizophrenia, manic-depression, and narcissism, and by the grace of God solely through maturity, most discard these leanings and morph into acceptable human beings. I was prepared for the frustration factor when I conceived, as I had learned over the tenure of my teaching career how not to react to my students’ ridiculous behavior without stroking out. I was not prepared for this much concentrated irritation, in this degree of intensity, for forty years. In all fairness to Justin, when he’s healthy, well-rested, and not being denied some absolutely imperative request, he is lovely to be around, and in some respects, is only mildly more annoying than most children his age.

But not today.

Today, I am done, and I haven’t even woken up the other one yet. I am finished with the spinning, the compulsions, the incomprehensible need for systems I cannot even begin to fathom with my exhausted neurotypical mind. For once, I am freed from pondering how I’ll teach him to tie his shoes one day, how I will ever encourage him to utilize a fork consistently, what will happen to him when I’m dead. Today, I’m just annoyed as hell, and living for 7:56 AM when both boys will be ensconced in their respective vehicles, hurtling towards an education, and I will be pounding the pavement of my humble three-mile running route to exercise both my body, and my soul. This morning, it’s autism one, mommy zero.

But tomorrow, I will kick its ass.