September 19, 2011

Still in the Woods

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 10:21 am by autismmommytherapist

He’s a blur as he races past me, my whirling dervish of a youngest son, filled to the brim with unrelentless energy despite the fact we’ve just returned home from an hour-long sojourn at a local playground. “YOU CAN’T CATCH ME!” he yells with his outside voice in our very inside family room, and he is literally correct, as his middle-aged mama is no longer fast enough to corral him unless he wants to be caught. I tell him for the fifth (or was it thousandth) time not to run in the house as he’ll get hurt, and as he slides behind the curtain that blocks off access to our garage and laundry room I remind him not to pull on said curtain, as he attempts to hide from me.

I see the slight vestige of a sly grin on his face as he disappears, and as I make my way to the kitchen to deposit those dirty dishes that seem to multiply freely of their own accord, I hear it. RIP!!! followed closely by CRASH!!!, and I turn in time to witness our thick denim curtain, iron rod, and holders with pointy edges tear from the wall, and fall inches in front of my son’s face. A loud “Uh Oh!” is quickly followed by my asking my four-year-old pointlessly how many times I’ve told him not to grab that particular fabric, to which he replies, “I’m sorry Mom, my brain made me do it.”

I think to myself, “Thanks hon. Now how exactly do I respond to THAT?”

He’s absolutely right of course, on so many different levels, and that’s the main issue with his type of autism that we all seem to be working on, from his parents, to his sitter, to his teachers. He often (like many other four-year-olds I’m told) lacks that initial impulse control, that ability to derive right from wrong in certain situations, sometimes ones that really matter. More than his anxieties or need for certain rituals, this lack of control is what worries me the most.

Since he inherited the “tall genes” from his father he already looks older than he is, and I find people in our community to be shocked when I tell them he’s still in pre-k, see them often sporting a look that says, “oh, THAT’S why” on their faces after hearing my response. He looks and sounds completely “typical”, and that fact, coupled with him appearing older than he really is, already puts him at a disadvantage. I don’t want people to regard him as “bad”. I don’t want him to think he’s “bad”. So his next comment just crawls into my soul and takes up residence there, and I know it’s not going to relocate for a long, long, time.

“Mommy, my brain is bad”. Crap.

I sit down on the floor and cuddle him close to me, and we engage in a long discussion about good and bad choices and brains, and take a brief detour to reflect upon the demise of dinosaurs. We practice counting to three before making a choice, a strategy I’m pretty sure won’t hold up in court. He says when that pesky organ of his tries to lead him astray he’ll respond with “No brain, bad choice, I WON’T do it!”, and he ‘ll instead take the absolute opposite path. We practice different scenarios, both at school and at home, all with my youngest reigning victorious, vanquishing that body part hell-bent on leading him into temptation.

“I want to be good, Mom” he sighs softly into my shoulder, and my heart breaks open just a little more, an organ of my own that has just begun to repair. I ask him to look at me and tell him he is my very good boy, and that making good choices is one of the hardest things in life, that even adults struggle to do the right thing, including (definitely including), his mama. He smiles and slides off of my lap to find that book on dinosaurs, the one with most of the answers.

I wish it were that simple to find all the answers for him.

I am reminded, usually on a daily basis, that despite his ability to speak, remedy his mistakes, and socialize with anything alive, that we still have a long way to go with helping him walk in a more “typical” world. What with Justin’s transformation into a mostly compliant, happy-go-lucky child, I am often struck by the irony that my far more autistic offspring is frequently the easier one to manage. My youngest will have to navigate the murky waters of friendships, learn to engage in dialogue not solely centered on his interests, and eventually work his way to remaining still for more than three consecutive minutes. He has a long way to go as he matures, and I’m so grateful he has what I like to call his “tribe” to help him get there.

In the meantime, we’re not out of the woods yet.


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.