October 7, 2014

Sleep, Glorious Sleep

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 2:07 pm by autismmommytherapist


Today’s post should come with a warning- it’s messy, there are no pretty vocabulary words, just truth.

My boy is struggling, and by extension his family is too.

Today, I’m just done.

Zach’s been plagued by insomnia for the better part of four months now, and since sleeplessness with a child is a family affair, his mom and dad have experienced it too. We were on top of it from the start- I enrolled him in a sleep study through the Autism Treatment Network/ Autism Speaks at CHOP (the nurse made house calls, it was fabulous.) We cut off technology after 7:00 PM.

We made his room as dark as he could stand it. We’ve upped melatonin, given warmer baths, used massage, yoga and breathing techniques to relax (all of which have worked to make me sleepy, not him.) In an act of desperation I even tried aromatherapy, which sadly my boy finds disgusting (but hell, at least I like it.)

Truly, we have left no stone unturned (and I know because I’m the one turning them.)

And I’m trying not to go to my dark place (it’s where the awful thing is PERMANENT AND WILL NEVER GO AWAY, anybody else ever visited there in their autism journey?) as it’s obviously counterproductive. Hopefully, it’s not true either. Today, as I hauled my tired middle-aged ass out of bed at an ungodly hour to deal with a tangled blanket I reminded myself that we kicked this demon once this summer, enjoyed a two month respite from seeing our child 24/7.

Today I am really up for a respite repeat.

Short of that I’m going to remind myself that so much that happens with autism is cyclical, that we’ve been through periods of aggression and insomnia and extreme OCD with Justin and have come out the other side. We will with Zachary too.

At least I’m telling myself this, because I’ve already eaten three days worth of chocolate to “wake up,” and the situation’s getting serious. The holidays are approaching after all.

The truth is I just feel so badly for him, because he’s a wreck after these nights, and I know his little body wants and needs the sleep. And since the “sleep spell” I made up for him no longer seems to be working, I’m throwing this out to the universe.

Let this boy sleep. Let his mom and dad sleep too.

And hurry up about it because I’m running out of chocolate.

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November 21, 2011

Third Time’s the Charm

Posted in Life's Little Moments tagged , , , , at 4:02 pm by autismmommytherapist

It’s day two of NJEA, the break from school I detest the most all year. My revulsion for the mini-vacation is due in part to the fact that there are no holidays (read “gifts”) to distract me from the necessity of filling four consecutive days with my boys. I also find the conference irritating because everyone who lives in Jersey (or those not vacationing in Disney) will be attempting to kill time in all the museums and playgrounds I proprietarily haunt, and my eldest in particular is not fond of crowds. Last, I thumb my nose at NJEA because it’s in NOVEMBER for God’s sake, and all the good stuff around here is closed.

I’m sure the New Jersey Education Association is distraught by my rejection.

In an effort to fill some of Justin’s ninety-six hours off (but who’s counting), my mom and her partner have kindly offered to help by giving Justin another try at a sleepover. So, after a day of too many computer games and a gratuitous trip to the mall, we’re finally headed out on Route 195 to grandma’s house. This trip will herald our third attempt at having Justin sleep in a bed other than his own. The first try was aborted after the consumption of too much pizza, ending with a late-night return from grandma’s beach house to Justin’s primary residence, where he promptly fell into my arms and then slept for twelve hours straight. Our last unscheduled attempt coincided with Irene, an experience that made me (and every adult in the house) reconsider our positions on taking Valium as a snack food. I admit, as I head west, that this time I’m hoping for better.

If not, at least my mommy will have fed me.

I’m already feeling slightly victorious, because I let him watch me throw his sleeping bag, pillow, and fishy blanket into a large garbage bag, which he knows is a signal for “we’re out of here”. There were no protests, tantrums, or emptying of said garbage bag back onto his bed, so at this moment, things are looking up. He got even more excited when he saw the suitcase, sweetly helped me drag it to the car, a chorus of “eee” accompanying us the entire way. I told him several times we were sleeping at grandma’s and that I’d be with him the entire time, and I swear he understood the plan. There’s a certain grin he saves for my mother, and every time I mentioned her, it was on display.

Justin has always loved his women.

We arrive at my mother’s in record time (as I’ve mentioned there were no school busses to slow us down), and I have Justin help me lug our paraphernalia upstairs. I spread out his sleeping bag on the bed and show him where I’ll (in theory) be sleeping, and he flashes me that bright smile once again. I am certain he understands our agenda.

Whether he complies with it or not is another story entirely.

An hour later Justin engulfs his dinner, prompting me to wonder if I should perhaps be feeding this child more. After consuming his “grandma brownie” he bolts upstairs to bed, cradling the crib toy my mother used to cajole him to sleep when he stayed here as a baby. He is grinning ear-to-ear as he manipulates the dials, giving equal time to “Lullabye” and “Twinkle Twinkle Little Star” respectively. My mom and I bathe and clothe him in his new pajamas, and he eagerly slides into his sleeping bag and bed, permits us to hug him goodnight, then blatantly turns away from us so we’ll leave. I’m already victorious that he hasn’t attempted to drag his linens, suitcase, and mother down the narrow stairways of my mother’s home a hundred times before slumber, but dawn is still eleven hours away, so I temper my triumph.

I’ve learned with this child, a lot can happen in eleven hours.

I sneak up a little bit after ten (which sadly, is past my bedtime these days), and manage to avoid all the creaky floorboards and slide into the daybed without incident. Eventually, exhaustion takes over. The two of us remain in slumber until about 1:30 AM, when I wake to the creepy feeling that somebody is watching me. I open my eyes warily to regard my son standing in the middle of the room just staring at me, and I see a huge smile stretch across his face as he realizes mommy is awake too. I sigh, drag my forty-four-year-old frame to the floor, and begin what I believe will be the first of many attempts to get my boy back to bed.

Damned if he doesn’t snuggle in on the first try.

We’re not entirely home-free the rest of the night, as this scenario is repeated again at 3:30, this time with a gentle push on my shoulder that makes me grateful I’ve been on that blood pressure medication for a while. He returns to bed easily this time too, although his mother has a tougher time returning to unconsciousness. I seem to make it back there just in time for dawn and my son to come calling, which prompts me to shuffle into the big bed with him, and beg him to give mommy just a few more minutes before we head downstairs. Justin relents, even remains still for a quarter hour, enough time for me to remember my name, and return to our world. It’s morning, and except for scaring a few more years off my life a couple of times (perhaps longevity is overrated anyway), Justin made it through the night. Which means Disney, here we (eventually) come.

Next year, I might even like NJEA.

June 22, 2011

In Your Dreams

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 6:31 am by autismmommytherapist

“Mommy, I had a bad dream!” I hear Zachary yell at the top of his lungs from his room, for the second time in thirty seconds. I pause our flatscreen and race upstairs to hold him, more out of a desire to prevent his waking up his older brother than to comfort any of my youngest’s nightmares. I literally put him to bed four minutes ago, so I’m reasonably certain this cry of fear is truly just a summons for snuggling, a ploy for eking a little more of my attention out of the day. I manage to make it to his door before he unleashes his lungs again, and witness his wide, beaming smile as I cross the carpet to him.

He looks at me in utter earnestness, and lies, saying “I fell asleep and had a nightmare that the dragons were here”. I don’t have the heart to contradict him with the fact that he was only alone long enough for me to watch one commercial, which generally isn’t enough time to conjure up dragons, or any other unworldly demons. He stretches his arms up to me and I lift him with mine, inhaling that intoxicating smell of baby shampoo coupled with little boy, and retreat to the corner where our glider awaits.

I’m hoping my pause on a Weeds rerun holds. I sense this is going to take a while.

I am right, and it does. First there is the litany of lullabies to run through, of course in a specific order (who knew “London Bridge”, with all its inherent drama, can have a calming effect on a four-year-old?). Then there is the traditional recitation of “all who love Zachary”, which fortunately, takes quite some time to conclude. Last, there is the five-step hug/kiss/hand hug/”goodnight”/”now I can go to sleep” routine, which can never be varied if I actually want to make it out of the room before midnight. There are final reassurances, reminders to call me if those faux amphibians return, and eventually, a small child grants me permission to leave.

It’s good to know who’s boss.

I close his door, but my hand lingers tentatively on the knob, a bit reluctant to put closure on the moment. I am aware that me and my boy now exist in a time where I can often banish his fears, protect him from those imaginary predators who plague him. I am also aware this cocoon within which we are enmeshed will one day burst, and he will be required to wield his own sword against whomever in the real world conspires to frighten, or harm him. I am confident he will one day encounter the tangled webs of friendship, the challenges of acquiring an education, the tightrope walk of navigating his emotions and behavior. Physically, I won’t be there for most of it.

But I’m here now.

And I’m hoping my theory is right. I myself was enmeshed within my own cocoon of unconditional love for a good part of my childhood, a recipient of the constant embraces and praise of all four of my grand-parents, aunts and uncles who played with me, parents who doted on the only girl, and the only grand-child on both sides of the family for many years. That singular, dedicated love sustained me through many difficult times throughout the years. It contributed greatly to the core of who I am.

My husband and I can’t offer all of that to Zach. We don’t live with a set of grand-parents, and our families are more scattered now than they were in both of our youths. We have my mom, but often it’s just the four of us in this house, the only home Zach has ever known. I wonder, as my hand gently slides from the door and reaches down to pick up an errant sock in the hallway, if that unconditional love we’re trying to replicate will be enough. I want my boy to have friends, to be able to sit in a seat at school, pay attention, and learn. I desire for him a life consumed not by fright, but by joyous anticipation of the next fun thing just around the corner.

I simply want him to have a good childhood.

So, his father and I will give it our best shot. There will be discipline when required. Reassurances that we love the child even if we don’t love the behavior. Hugs and kisses galore. Hopefully, we will provide a strong foundation from which he might sometimes stray, but to which he will always return.

And if we’re very lucky, for this child, that just might be enough.

November 21, 2010

Sweet Slumber

Posted in Life's Little Moments tagged , at 8:38 pm by autismmommytherapist

A huge milestone has been accomplished chez McCafferty this week, one I sincerely doubted would be met by the time my oldest son became a teen-ager (which trust me, would have eventually resulted in a REALLY awkward situation, and not of the Jersey shore type).

My not-so-little boy is now slumbering in a real, bona fide, big boy bed.

Traditionally there has been a great deal of angst surrounding sleeping arrangements and Justin. My sweet guy spent almost his first half year “napping” or attempting unconsciousness while remaining securely belted into his car seat, which was the only way his sleep-deprived parents could ever cajole him to close his eyes for more than seventeen consecutive seconds. He never really approved of the bassinet either, howling his discontent mere moments after being placed into it and then continuing for an ETERNITY, or just an hour (which to his increasingly cranky parents eventually became the same thing).

We finally accepted sleep was not going to be his forte, and figured he could cry just as well in his crib, which we prayed he would acclimate to before we turned fifty. It only took two more decades (okay, YEARS, but it seemed that long) before Justin began consistently sleeping through the night, which to me constitutes ten uninterrupted hours. I continue to require enough time to get my beauty rest, have some wine, AND a catch a few hours of cable television.

Mommy or not, I still have my standards.

So no more car seats, cribs, cots, or junior beds allowed, Justin firmly resides in the big time now. Certainly, the bed I selected had to match the furniture, and I was FORCED to purchase sheets that compliment his room’s under-the-sea theme (because there had to be a theme of course), one wall of which is graced with a lovely mural I neither designed nor painted.

Come on people, I scrapbooked AND traced “turkey-hands” this week. Cut me some slack.

I’ve made this into an event here, with Zachary anxiously anticipating the bed’s arrival and construction (yes, we’re wimps and are shelling out the assembly fee, so sue me). We arranged the unveiling for a Friday evening, just in case it took Justin a few nights to accept his newest sleeping arrangements (yes, a few nights, I’m playing the glass overflowing here). Much to Zach’s delight we practiced hiding in Justin’s room and yelling “SURPRISE!” for his big brother’s grand entrance, so my youngest was primed and more than ready for the big night to commence. Only one wild card remained:  I never really know how Justin is going to react to anything. Much to my relief, if I’d had any doubts as to how he’d feel about his upgrade, they were all banished the second he crossed the threshold to his room:

And here’s wishing to you and yours, one of my favorite things EVER, a simple, satisfying, good night’s sleep.

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.