January 18, 2012

Time Out

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:24 pm by autismmommytherapist

I hear his belly-deep chuckle as I’m clearing dishes from the table, a sound I haven’t been graced with in weeks. I dump dirty dishes on the counter-top and walk quickly to the living room, where I see my eldest boy, cocooned in blankets on the couch. He is laughing out loud at the same segment of a video on his DVD player that he hasn’t seen in ages, one that was once a favorite. He looks up at me to share his joy, another act I haven’t seen since before his illness almost a month prior. His eyes leave mine, return riveted by the children playing Simon Says on the small rectangular screen.

I come closer to the couch and he smiles at me again, a clear and concise invitation. I sidle into his now considerable bulk, and wrap the blanket around me so we are tangled up together. Justin rests his head on my shoulder and squeezes my knee, the tactile tricks he uses to communicate his excitement that I’m sharing the experience with him. I place my arms around him and hug him with all my might, then graze his slightly flushed cheek with multiple kisses.

Briefly, thoughts of our recent trials together fall away. Episodes of his increased, and at times desperate need for order, disappear. Memories of the  fierce pinching that conjure up his toddlerhood fall away. The bouts of sobbing with no apparent antecedent, the most difficult symptom for me to bear, are momentarily forgotten. He’s truly present. He’s happy. We’re together, having a simple mother-son moment.

And I relax, a reflex I’m still trying so hard to relearn, and simply revel in him.

January 17, 2012

Respite Repealed

Posted in If You Need a Good Cry, My Take on Autism tagged , , , , , , at 10:26 am by autismmommytherapist

“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.

We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.

Then, he sees the french fries.


We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.

Then, I’m sobbing too.

I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.


It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.

Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..

He is relentless.

Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.

It crosses my mind that someone might even question my own behavior with my son.


I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.

I need to conserve my strength.

I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.

And they need to be heard.

I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.

And I hate it.

September 1, 2011

Growing Pains

Posted in Life's Little Moments, My Take on Autism tagged , , , at 8:09 pm by autismmommytherapist

We’ve survived the terrible twos with Zachary (which actually weren’t that terrible). My husband and I also made it through the soul-sucking threes with our youngest, a year far more grueling than the one prior, punctuated as it were by daily tantrums and heated assertions of “I CAN DO IT!!!”. We sailed straight into the apparent glory of four, at which point I indulged in the belief that we were technically “done” with that mode of taxing behavior (as a friend of mine once said, “the store is closed”, as Jeff and I will not be unleashing any more offspring into the world). Indeed, we had a honeymoon period with Zach, a hiatus if you will, during which my last child seemed to demonstrate great progress in choice-making (one of my personal favorites), self-regulation, and a desire not to respond to every one of my requests with the word “no”.

Then, the honeymoon was over.

I don’t know if it’s our absurd demand that our four-year-old deign to poop in the potty (we’ve progressed from stickers to a “castle bed” to Disney, I’m not really sure where to go from here). I can’t tell if the regressive autism he experienced at eighteen months just delayed him emotionally, so that what we witnessed during his toddler years was just a hissy-fit appetizer. I’m not certain if the drama that ensues when he spots a single drop of juice bubbling up from his sippy cup has its origins in autism, or if the histrionics are a direct result of a blend of divaesque genes from both sides of the family forest gone wild.

And honestly, I may never know.

I am constantly struck by the irony of having two boys with autism, and the one far more profoundly affected simply desires peace, love, and happiness. Justin is me as a young child, requires little more than a calm environment and kisses. He has completely inherited my personality (at least the one I had before autism entered my life, after which I found caring about other peoples’ happiness far too tiring). Except for his impulsivity, and whatever neurological misfires compel him to rip things and hide footwear, even with a major neurological disorder, he would be the easiest child on earth to raise. If left to his own devices Justin would be completely happy to drink juice, watch snippets of Baby Einstein repeatedly, and conduct hour-long snuggle fests with his parents or his sitters all day. He is my “I want everyone to be happy” child.

And then, there’s the drama king.

Sometimes, it’s so difficult to tease out what’s causing the catastrophe, as turning off an already-concluded tv show so one can eat dinner does not seem like an act commensurate with the now-postponed Apocalypse. Then again, I’m no longer four (my “fine lines” will vouch for that statement), so perhaps I just don’t understand. All I know for sure, and this certainty stems from over a dozen years in the classroom,  is that this child, with his mild autism that most people don’t even register, will be just as challenging in his own way as his moderately affected, non-verbal, often OCD-tormented brother. Unfortunately, although we love them to death, it seems that when me and my spouse procreate, we do not produce easy children.

And today, that knowledge just makes me feel so, damn, tired.