August 18, 2014

Dream Catcher

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:17 am by autismmommytherapist

 

Summer 2013 050

“Let’s go to the boardwalk Mom” Justin asks me, and I watch as he casually slings on his tivas and heads toward the door.  He is clutching his tattered copy of “the Very Hungry Caterpillar” in one hand, munching on a soft pretzel with the other.  In my dream state I feel both elated that he is talking to me in complete sentences, yet confused that this is happening.  As I pick up my purse he pulls the front door open and gives me his signature grin.  I scrounge around for an errant flip-flop as my alarm goes off, and dreams are done.  I lay quietly for a moment trying to recapture the sound of his voice.  I find its timber and tone escape me.

I reluctantly rise from the warm cocoon of my bed and begin my day.

I began having this dream a few months after Justin was diagnosed with autism spectrum disorder, back when sleep was fleeting for both of us and dreams were easier to recall.  Ten years ago I would often wake up and feel desolate, certain my son would never speak to me in such a complicated fashion.  The dream would be difficult to shake as I began my morning, and often I’d find myself hurrying into Justin’s bedroom to get my “fix” as nothing could chase away the blues more than the sight of my son.  I used to have it frequently, but over the years its prevalence has faded, much as my initial despair at my son having severe autism has retreated as well.  I’ve noticed it’s come back to visit me over the past year as we’ve been eliciting more words from Justin.

I’ve also noticed the dream no longer makes me sad.

I had a number of conscious dreams for my son even prior to his birth, goals I’m certain the majority of parents wish for their progeny.  Back when I’d feel him swivel what would turn out to be his lanky limbs in my ever-burgeoning stomach, I’d smile and imagine he might have his father’s height, would perhaps shoot hoops one day with me cheering from the sidelines.  I also hoped he’d have my love of literature, that we could share my favorites from childhood, and discover new works together.  To be honest, I completely took for granted he’d achieve the biggest goals I had for him- college, career, friends, and independence.  I barely gave them a moment’s thought.

For years, their elusive nature would haunt me.  Now, for the most part, they no longer do.

It took me years to relinquish my dreams for Justin, almost a decade to comprehend that these were my dreams for my boy, not his.  It took me almost ten years to understand that he did not have to follow my life trajectory to be happy- that his daily desires were commensurate in worth to mine.

Despite severe autism Justin is having a wonderful childhood, is mostly a happy boy, engaged at school and in activities he adores.  He loves to play on the computer, stims on a segment of a DVD over and over, and craves his carbs.  I’m not inside his head, but I imagine his dreams embrace these realities, that they bring him joy.  My goals for him are not better than his.  They are simply different.

And acknowledging, accepting and embracing this realization has brought me peace.

 

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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.

May 12, 2011

Dream State

Posted in AMT's Faves, Life's Little Moments tagged , , , , at 9:03 am by autismmommytherapist

The alarm goes off, that damn clarion call to consciousness, and I am abruptly jolted out of a dream that managed to incorporate Conan, dinosaurs, and classmates from high school (not that I’m implying we’re dinosaurs, these are just my DREAMS, people). I toss off my sleep-deprived musings and shuffle to the bathroom, making a quick stop at my bedroom door that’s always slightly ajar so my husband and I can hear Justin should he need us in the night. All is quiet on the western front, and as I prepare myself for the day, running through the twelve things I need to do before my offspring even make it onto their respective busses, the thought hits me.

Oh my God. All is quiet on the western front.

You should know that along with death, taxes, and the imminent broadcasting of a new reality tv show in Jersey, Justin is certain to herald his wakened state to the world well before 6:00 AM every day. Jeff and I take shifts, he taking the middle of the night/wee early hours (this usually involves a trip to the bathroom with Justin followed by hugging, singing and a cajoling back to bed of Kumbaya proportions), and me taking dawn and onwards so my tired spouse can return to slumber. Zachary, thankfully, seems able to sleep through the Apocalypse, so it’s really just the three of us to contend with when the moon salutes us in the sky, and for that I am grateful. Neither I nor my husband is really in full family mode at 3:00 AM. We have our limits.

And usually, when it comes to sleeping in, so does Justin.

Although it’s rare that morning arrives and affords me an unconscious child to spy upon, I’ve still managed to perfect the art of avoiding those creaky floorboards just adjacent to his room, and mastered the technique of turning his doorknob just enough to gain entry to what I like to refer to as his womb with a view. It takes a few seconds for my eyes to adjust to the almost feral darkness we’ve created for him to promote sleep (not just for him, for all of us), and I take care to wait until I can safely avoid the littered landscape of his carpet successfully. I wait silently as my ears acclimate to the soothing sounds of white noise and air purifier, the machines that manage to drown out the cacophony of Justin’s younger brother as he talks his way into the night next door.

And then, I spot him.

His head and feet have made their own attempt at trading places during the course of the night, his torso splayed smack in the center of his mattress so that his body forms an almost perfect half of an “X” under his sheet. Justin’s pillow is dangling precariously from the footboard, straining to safety on the floor below. Somehow he has managed to cocoon himself within every soft piece of linen available to him, from his cousin’s sleeping bag, to the three blankets we provide him both for warmth and comfort. All I can see of him at this moment is his little face inching out of the “fishy throw” created by Grandma. He is completely at peace in his sonambulance, quiet save for a slight snore, a gift provided by those dreaded spring allergies. He is remarkably still.

And I wonder, how I wonder, what he dreams.

I am fully aware of the content of his sibling’s nocturnal wanderings, which invariably involve trains, presents, and bossing us around. I ask Zach about them every morning after he’s completed his lengthy rouse from slumber, and he is happy to regale me with his nighttime reveries, in which he generally presents as the hero. Once, he said he dreamt that Christmas was coming four times this year, and I quickly squashed that hope, grinding it into dust with the heel of pragmatism, as clearly Santa can’t make a trip around the globe each season.

Never too early to inject a little reality into a pre-schooler’s day.

The truth is, I am unlikely to ever know what events and thoughts infuse my eldest son’s dream state. I’m not certain if his musings focus on equine pursuits or popcorn, pretty girls or unlimited computer time. He may never be able to tell me.

Hell, I’m not certain he remembers his dreams at all.

One thing I am certain of however, are my dreams for him. There are those practical ones, which involve a stable as a full-time job, and a safe residence during his adult life. I envision for him a continuation of what I hope he feels is an engaging childhood, and a deep wish that his crush around the corner will never move out of her home. These are, of course, the realistic goals that haunt me daily, and sometimes have a strangle-hold on my dream state as well.

But I have more ethereal wishes too, intangible to touch, yet every bit as compelling as those I can actually see. I dream for him a life in which those who interact with him extend him only their empathy, and kindness. I dream for him a community in which he is viewed as just as human as everyone else, a complete person capable of the full range of human emotion. I dream for him a world in which not only are his gifts utilized to their full potential, but that his presence in it is seen as a benefit to all, not a hindrance to be endured.

My internal clock ticks, and I cease my musings and tiptoe backwards to the door that remains slightly ajar, his stale-sweet breath lingering in the air around me. I will return here soon to cajole him into our universe so that he may greet the day, but for now, I permit him rest. I allow myself one last wish for my eldest, my boy, my heart.

I dream he will always be loved.

Happy Birthday to my beautiful eight-year-old (!) boy!