March 21, 2012

Let’s Have a Chat

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 9:15 am by autismmommytherapist

Justin’s school bus grinds to a halt, and as I approach the stairs that will lead him back to my care I hear his low-grade “eeee”, which can either signal happiness, or distress. He lumbers down the stairs and brushes past me, ignoring my query of “Hi Justin, how was your day?”, and immediately runs to the passenger side of my car to see if his “we’re going out” bag is inside. Since we’ll be staying home today it’s not, a situation which evokes in him another torrent of “eeee” sounds, quite vehement in nature.

It’s now apparent to me that the first round of vowel sounds I heard initially were emanating from a very irritated boy.

I thank his lovely bus driver and follow Justin to our front door, which he has unceremoniously flung wide open. I hear him before I see him, my almost-nine-year-old who is sobbing his heart out on my living room couch. I am grateful that Zach is upstairs playing in his room, which buys me some time to try and figure out what my non-vocal child is trying to communicate.

Making my way over to the sofa I trip on his backpack, my visual cue to release his iPad from its confines in his new Spiderman carry-case. My fingers quickly find his communicative device and activate it, in the hopes I can cajole out of him what he wants. As I walk over to my son, iPad in hand, I recall a conversation I’d had with his teacher in the past week.  She had shared an anecdote about Justin which gave me some hope that my child might one day attempt more complicated conversations than simply asking for juice, or telling his aide that two plus three equals five.

It seems that not too long ago the company that makes his coveted macaroni-and-cheese lunches saw fit to change their recipe, rendering their creation far creamier than my son would prefer. Although they changed the label slightly to indicate its new “creamy nature”, nobody noticed the difference. On this particular day Justin’s teacher served him his lunch expecting his usual reaction of unbridled enthusiasm (my boy, like his mom, loves his carbs), but Justin wanted nothing to do with his pasta.

As soon as he saw his meal minus lid he pushed it away, making his staple sounds of irritation, clearly unhappy with his designated meal. His lovely teacher of course was confused, as he’d consumed this concoction eagerly for months, and went to retrieve his iPad.

She encouraged him to “just try a bite”.

His response was, “garbage”.

My son’s teacher is not one to give up so quickly, so she tried again.

This time my son’s answer was, “trash”.

Knowing I hadn’t sent in his “back-up lunch” of peanut butter and jelly that day, she gave it one more shot, reminding him in no uncertain terms that he usually loves this meal. She shared with me that he then looked her in the eye, pushed the offending container even further away, and pushed the button for “stop it”. Twice.

My eldest child had just simultaneously disrespected his teacher and held his first conversation with her. Both of us had never been so proud.

I snap back to reality as the corner of a comforter smacks me in the face, and I reach over and free Justin’s own unhappy face, offering him what I like to call “his words in a rectangle”. I admit I don’t have a great deal of hope that this will solve anything, because although he uses the device often at school, he’s far more apt to push it away at home than employ it to get his needs met. Still, I have to try, and hope for a single mand (request) of a wish I can easily fulfill.

I wish it worked that way for my needs too.

I hand him the device, and he surprises me by not shoving it away. Instead he sits up and throws off the now offending blanket. My son presses the “I want” button, scans through a few pages at lightening speed, and presses the word “toast”. He then hits the top bar, which sings out in its slightly robotic voice “I want toast”, and stares at me. To date, this typical single request has been the entire extent of our “verbal communications”.

But today is different. Today I’m incredulous that this boy is longing for a piece of meticulously buttered whole wheat bread, particularly because the slice I offered him this morning ended up in the garbage can. I look at my son and say “Really Justin, you want toast?”, and without batting an eye he leans in towards me a bit and hits a button that says a resounding “yes!”. Then he throws his cover to the ground, stomps off to the kitchen, and takes his place at the table. He’s made things clear. It’s 4:00 in the afternoon, but my boy wants breakfast.

Considering this is the longest amount of dialogue we’ve ever had, you can damn well be certain those whole grains were quickly on the way.

I sat down next to him at the table and watched him consume his snack with gusto, all smiles now, actually giggling when I handed him a napkin. I ponder for a moment what it must be like to be approaching double digits, and not be able to summon the sounds to request a staple of the food pyramid. Pushing that thought away I smile, because he actually did get his needs met, just not in the traditional manner to which most of us are accustomed.

My boy got his toast. And his mom got to talk to him.

Our dialogue didn’t center around what he’d done in school that day. We didn’t even have a simple discussion about the weather. But it’s progress, pure and simple. It’s progress translated from school to home, which is even more important.

It was just a simple conversation between a boy and his mom.

It was hope.

February 13, 2012

My Un-Birthday Boy

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 9:31 am by autismmommytherapist

I open the back door of our SUV, and instead of receiving a hug from my usually happy and active post-horseback-riding boy, I view instead a morose, still child, with tears brimming from his eyes. I release Justin from his constraints and he slides quickly out of the car, agitated, and heads toward the street. This is the opposite of his Saturday routine, where he generally runs toward the house excitedly, throwing himself across the threshold in pursuit of snacks. Today I have to block him as it looks like he’s trying for tarmac, but just at the lip where street and sidewalk meet, he stops. He puts both hands on my shoulders, gives me a look more of hurt than of anger, and buries his head in my chest.

We make it back to the house, he sliding along reluctantly as I lug boy and bag back to safety, his mother simultaneously trying to puzzle this one out. Even though my eldest can’t talk, and at times there are no icons for what he desires on his iPad, I generally (and thankfully) often comprehend his needs. As the door bangs open I watch him run a few feet into the foyer, stop dead in his tracks, and regard the archway that divides living and dining room. Jeff comes into the room, and we hear a slight sob emanate from my son.

We then witness him run behind the couch, lift up a “sedated” helium balloon held captive by its plastic bag, the one we bought for his brother’s “kid party” that we’re hoping lasts for the family fete too. He sinks onto the sofa in despair, and I whip out his communicative device, cajole him into enough of an upright position to access it, and wait. Justin runs his hands over wet eyes, gives me one last forlorn look, and hits several icons. The rather flat, atonal voice of the iPad queen blurts out “I want. My birthday is. May 12, 2003”. My husband and I look at each other as Justin buries his head once more into our accent pillows.

Justin had seen the balloon before we left. Upon returning, he noted the dearth of cars on the street which would signify his guests’ arrival. The absence of the banner strung along the width of our home, the one always heralding an impending celebration, was the last straw.

My boy thought today we’d be hosting his family birthday party.

Truth be told, numerous thoughts fight for purchase in my tired mind at that moment. I think about how this kid just used visual clues he hasn’t witnessed in a year to make an assumption about this day. I consider how he’s clearly distraught, but hasn’t gone after either of his parents to protest the fact that his birthday will not be celebrated this Saturday. Finally, I mull over how truly unpleasant the rest of our afternoon might be.

I admit, that last one gets a lot of attention.

Despite the fact that the rest of our day may be spent in what I like to call “survival mode”, I have to say, I’m impressed. He didn’t miss a trick. He communicated his needs. And as I watch him take a juice box from my husband’s hand, it even appears he’ll be rising above the insult that his parents won’t be celebrating his birthday three months early.

We always assume comprehension with Justin. But sometimes I think he understands even more than we think he does.

Soon, my boy is responding gleefully to tickles from his beloved dad, and I watch as he lurches off the couch, grasping his father’s outstretched hand. They’ll be heading upstairs to computer games only Jeff knows how to command with any aptitude whatsoever, and it seems that our “gaffe” will be forgiven. As they ascend the staircase my spouse throws me the “we dodged that one” look, and I smile, because to Justin’s credit, we did.

I think back years ago to some really dark days when my youngest was a toddler, and I wasn’t certain he’d ever communicate in any way other than screams and sobs. My mantra for that period was “he understands more than you think, he’ll get through this, together you’ll find a way”. It took a long, long time, and there were more than a few bumps in the proverbial communication road.

But finally, it does appear that my son is finding his way.