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Archive for the ‘non-verbal’ Category

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

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After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

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The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

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Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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In our continuing quest to help Nik learn to communicate his wants and needs in a manner which is far less annoying than whining or crying more universally understood, we’re building on the small sign language vocabulary he already possesses. I may have mentioned in a post or three about how rapidly Nik’s skills are developing since we took him off the Lamictal, yes? And I may have also mentioned a time or twenty that his appetite —rather his willingness to taste things —is increasing at an amazingly fast rate which, if unchecked could impoverish a small country, no?

Nik long ago learned the sign for cracker which is made by flexing your left arm at the elbow and tapping the elbow with the closed right fist. It comes in handy at feeding therapy —about the only place he will deign to eat goldfish crackers anymore; his palate has become more sophisticated since he’s no longer taking the seizure meds.

Nik’s latest culinary favorite seems to be small pretzel rods —”dipping sticks,” actually. They are the right size for his hands and he can carry one around nearly everywhere he goes while he plays. Quite convenient, that. Unless you have an aversion to sweeping, vacuuming, and mopping the floor at least once daily? But I digress.

Since there doesn’t seem to be a universal sign in ASL for pretzel, we’ve been using the same sign for cracker and then saying the word pretzel for Nik. It’s simple and it seems to work. But, Nik being Nik, he came up with something all by himself yesterday; it happened so fast that I wouldn’t have believed it if Niksdad hadn’t been there as a witness.

I was in the kitchen starting to get his dinner ready when he walked over to the gate singing and smiling. When Nik knew I was looking at him, he signed cracker, please. “Oh, would you like a pretzel, Nik?” I asked. Without missing a beat, he signed please and quietly uttered ge gah.”

Kid’s got me wrapped around his little finger like, well, a pretzel, I swear!

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Some toys are not meant for general thrashing and throwing or being ridden over by Nik’s Little Tykes tricycle. Those toys reside in a large white basket which sits on top of the battered white armoire in the family room; the name really is so much more glamorous than the furniture ever was. Still, it has served us well in housing, first, office supplies in the days before Nik was born, then Nik’s myriad small medical supplies through the years. It now does double duty —triple, I suppose —holding a smattering of medical supplies, some kitchen items in the bottom drawer, and the basket perched on top.

It won’t be long before Nik can reach the basket and hook his slender fingers into the openings and topple it, sending books and small toys raining down upon his head. I watch his daily attempts to do just that and know it won’t be long before he no longer needs to ask for my assistance. Today, however, he gleefully grabs my hand and drags me to the armoire.

Patting his chest in a fervent request for something currently out of his ever-lengthening reach, Nik smiles and waits. I’m not sure what he wants so I ask him to “use your words” and “show Mommy what you want;” it is of no avail. I run through a mental inventory of what items usually reside in the basket. His current favorite is not there; I wonder if that’s what he wants —in spite of his having just tossed it over the gate into the kitchen.

I offer him the insert for the item; he smiles and pats his chest with greater urgency. We are playing a non-verbal game of “hot or cold” and my only clues are his face and his hand gestures. After an interminably long minute of this game, Nik suddenly changes his tack. He looks at me pleadingly, puts his palms together and then fans his hands open away from his body; this is how he signs open. Many of his signs have multiple meanings so I assume that he is, in fact, asking for his book.

I ask him with both words and signs, “Do you want your blue book?” Nik grins and pats his chest in the affirmative. I lean across the gate to retrieve the book. Nik squeals in delight and then tries to put the insert into the base.

Praising him for his good communication and helping skills, I reiterate in words and signs that Nik now has his blue book. “Book. Book,” I intone for him, slightly emphasizing the “k” sound so he doesn’t confuse it with another word such as “boot.”

Without missing a beat, Nik looks at me. “Gah. Gah,” he says with the identical inflection that I have just used. With a smile, he takes his beloved book and settles onto the sofa to read and play.
I’m fairly certain we’ve just experienced our first intentional verbal communication which doesn’t involve tears or hysteria. I could get used to this!

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His indignant cries rouse me from my state of half-sleep. I sit up and groggily reach for the monitor, turning it up so I can hear a bit better. Through his sleepy sobs I hear him singing the tune of “You Are My Sunshine” —his “comfort me, Mommy” song. Like one of Pavlov’s dogs, I am trained well; I slither out of bed and stumble across the hall.

He closes his eyes and whines a moment as he moves my hand into just the right position to press over his right ear. Something still causes him discomfort but he cannot tell me what it is; it has been thus his entire life. I rest my hand on the side of his head; my palm covers his ear and I gently stroke his cheek with my thumb.

He turns his face slightly into my arm and sighs. He snuffles and wiggles to settle in again. In the dim light I watch him tuck one hand between the mattress and the side of the crib as if anchoring himself in place. Within minutes he is fast asleep again; I extract my tingling hand and stumble back to bed to wait for the next summons.

It is the same each night; like clockwork, he stirs and comes to half-consciousness several times. Each time I stop what I am doing and go to him. Unlike those endless and horrible nights of mere months ago, he no longer requires pain relievers, homeopathic remedies, or extra padding in the crib to protect his head from the force of his thrashing about. Now, he settles almost instantly when my hand touches his face. Like before, though, he is unable to tell me what troubles him so.

As I watch his cheeks go slack and his chest begins to rise and fall with the steadiness of slumber, I ponder whether the touch of my hand actually eases a physical pain or if it simply comforts him. Does he remember all that time spent together in the NICU? Two hundred nine days —five thousand-sixteen hours —of which roughly half was spent with me by his side nearly always touching some part of him.

Does he remember the feel of my hands cradling his tiny head and impossibly slender bottom when he was mere days old and so incredibly fragile? Does his body remember, even now, the outpouring of love and strength which flowed through my trembling fingers —willing him to live, to fight? Is this then what pulls me to him even now in those quiet hours in the middle of the night?

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His quiet singing and laughter rouse me from my state of half-sleep; I roll over and look at the lights on the monitor. With a smile, I sit up and rub the sleep from my tired eyes.

Each morning is the same; in spite of a night of disturbed sleep and whimpering cries, he awakes as if sunshine runs through his veins. He happily entertains himself while I drag myself to nearly full consciousness. I cross the hallway and pause outside his door; breathy strains of “Old MacDonald” or “Signing Time” gently tease my ears. With a smile, I open the door.

The sound of the opening door interrupts his musical reverie; he sits up with a sly smile and begins his nonsensical but deliriously happy babbles. I understand he is happy to see me again so soon. He stands and leans on the side of the crib, his face tilted up and lips pursed to deliver an unasked-for kiss. I steal two quickly before he begins to pull on my shirt in an effort to climb out of the crib. Bracing his hand on something more stable than knit cotton, I help him down. He continues to chatter and sing as we make our way down the stairs.

He squeals and scampers over to his toy bucket and begins to systematically empty it as quickly as he can. He finds his chosen toy for the morning and carries it to the sofa. He climbs up to await our routine of medicine through his tube, followed by clean pants and clothing.

He proudly pulls his shirt on by his self and then lies down to await his clean pull-up and shorts. Supine, he reaches to pull up his shorts. Once they are settled just so, I help him with the zipper. He sits up and snuggles against my side, glancing up at me with his most engaging smile.

“Aahh aahhh aahh ahhh ahhhhh!” I intone my best Tarzan yell as I gently beat my fists on my chest. He collapses against me in a fit of the giggles. I do it again just to hear his laughter and see the sparkle in his eyes. “Your turn; you do it!” I tell him as he reaches to pull my hands against his chest. He pats his chest with two open palms and tries to mimic the sound; it comes out as more of a satisfied sigh than a throaty warble. My heart turns to goo as he collapses against me in another fit of the giggles. I warble and beat my chest as his body shakes with mirth again and again and again.

Life is good. Sleep is overrated.

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ARGH!!!! I just knew better than to tempt the parenting gods. In my last post I bragged about the loss of a doctor and going to bed early. Sure…

I was up most of the night with Nik and another “mystery ailment.” There’s been something weird going on with one of his ears but it’s not an infection. Ever since Nik had his tubes placed (last September), he’s had some kind of weird sensory thing that wakes him from a sound sleep and causes him extreme discomfort. I know it’s the ear because we’ve had darned near every conceivable test to rule out everything from reflux to seizures to tumors. I am not exaggerating. I am convinced the doctor’s must think “Hmmm, classic Munchhausen by Proxy here.” But there really IS something wrong!

Lately, Nik’s been rubbing absolutely everything on his right ear…and ONLY his right ear. If he’s in the stroller and we’re in a store where a stranger is innocently shopping, minding their own business, Nik will reach out and grab hold of their shirt, pants, purse, bag, whatever and rub it against his right ear. He is constantly flicking at the back of the ear (actually just a tad behind the ear) and has managed to abrade the skin something terrible. We’ve seen all kinds of doctors and tried creams, antibiotics, you name it. Nothing works.

The worst part is that it does not seem to be a joyful, comforting sensation to Nik — quite the opposite. Sometimes he flicks and rubs so hard then gets very agitated and cries or whimpers. It is heartbreaking. Last night, he not only did those things but he arched and flailed and hit his head…something he hasn’t done a very long time. Clearly he is trying to communicate something to us about what’s going on but we haven’t yet debugged it.

The only thing I can think of is that this started up AFTER he got the tubes. That was when all the weird nocturnal waking and arching, screaming, head hitting began. That is when the ear flicking began in earnest. Before that, Nik only flicked his ears when he was sick; that used to be a clear indication that an ear infection was brewing. Somewhere along the line, the rules changed.

Nik never really had much trouble with his right ear; it was always the left that was infected or we couldn’t get a clear hearing test (leading to his temporary classification as Deaf-Blind this past school year). The right ear…”practically perfect in every way,” as Mary Poppins would say. I wonder if there’s some sort of auditory or nerve sensation that Nik now has from the tube in his right ear and if the flicking and head banging is his attempt at making it go away. I am tempted to ask the ENT to remove the tube from the right ear and see if it helps.

I wish he could talk and tell me what it is. This not being able to figure it out and having to watch him suffer is painful for me. I can only begin to imagine how it is for Nik.

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