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Archive for the ‘communication’ 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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After waking to play in his crib at 4:00 a.m. this morning, Nik finally convinced me to take him downstairs at 5:00. The very first thing he did was find his giant yellow ball and start bouncing on it. Yes, on it. Then, he insisted that I play with him; he even used his “nice” words (signs)!

Sucker that I am Having not had any coffee and thus not aware of my peril, I acquiesced. Little did I realize I was to replace the yellow ball! Truth be told, I adore having my son launch himself into my arms with a smile of delight and a squeal of glee. I remember all too vividly the months, nay –years, that it took for him to reach that point; I’m not about to pass up an opportunity now.

After bouncing on mama and on the ball wore thin, Nik decided it was time to dismiss me play by himself. Racing around the family room and laughing maniacally himself silly, Nik was having a grand time. I was finally having my first cup of coffee. Whew. (Some days there’s just not enough coffee to keep up with that boy!)

As I was pouring my much anticipated second cup, I heard a loud crash and a wail. I turned in time to see Nik fall face first into the edge of the sleeper sofa –the hard edge. I dashed into the room and scooped him up. “Shhh, you’re okay, sweetie. You’re okay. Can you show Mommy your boo-boo? Can Mommy kiss your owie?”

Fully anticipating that he would press the rapidly forming red welt on his forehead against my lips, I prepared myself for the fresh onslaught of tears. They never came. With a snuffle and a slightly shaky intake of breath, Nik raised his face to mine. Then raised…

…his index finger!

Yeah, big ol’ knot on his forehead and he’s oblivious to it.

ALL BOY.

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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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Nikolas is still in the process of learning how to communicate choices. Tough for a nonverbal little guy with lots to say. It’s not a precise science; more of an inexact, interpretive art which we practice every chance we get.
A typical encounter usually goes something like this:

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases from my hand.)
Me: Oh, you want Signing Time? Okay.
Nik: (Throws Signing Time to the floor and takes Mary Poppins from my hand.)
Me: Oh, okay, you want Mary Poppins instead?
I put Mary Poppins in the player; as the opening credits begin, Nik wails in frustration and flings the case to the floor.
Me: (sighing) Nik, do you want Signing Time instead? Can you use your words to show me, please?
Nik: Pats his chest to say “Yes, please.”

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Today…
Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases and very deliberately presses it against his lips in a kiss.)
Me: (Startled) Oh! You want Signing Time?
Nik: (Points his right index finger into the palm of his left hand —sign language for “show”— then pats his chest to say “please.” As soon as Rachel appears on-screen, Nik begins to clap wildly.)
You could have knocked me over with Yankee Doodle’s feather!

Happy Independence Day, indeed!

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It’s amazing how quickly things can turn around here; One day we’re up, the next we’re down and then we bounce right back up again! It seems that my recent weeks-long bout of sluggish energy and really poor concentration— to the point that I have felt the need to nap after working out and couldn’t remember what I’d said or done mere hours before— and a few other symptoms, including the muscle cramps and migraines I had at the end of last week, may have been the result of a fairly significant potassium deficiency. With my efforts to lose weight (pretty much at a standstill right now) and my working out quite vigorously, it seems I don’t consume enough potassium in the normal course of my day to sustain the amount I actually sweat out of my body.

Good thing my husband, the LPN, is such a smart guy! He caught it and bought some potassium supplements yesterday. After taking a few doses throughout the course of the day, most of my symptoms cleared up by mid afternoon. By this morning I felt more “normal” than I have felt in a few weeks! I even had a great workout and felt completely revitalized afterward. Wow. Now I know the signs to watch out for —and what to do, too!

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As I’ve mentioned a time or two, Nik has become enamored of Signing Time videos. The progress he has made in the short time we’ve been watching them is, to me, nothing short of amazing. (Don’t believe me? See here, here, or here!) Lately, Nik has been making such clear efforts to communicate —including asking for help— and having fewer and fewer instances of extreme frustration which lead to potentially self-injurious behaviors. Of course, I’ve learned many more signs than Nik but he watches and takes it all in —even if he cannot replicate the signs he sees. We’re learning how to adapt and helping Nik find ways to make choices and needs or wants known; whenever possible, I ask him to “use your words” or “show me your words” as I model them for him.

We’ve progressed to auditory and visual scanning in many cases, too! When I know what Nik wants, I will play a game with him and present— with both words and signs—a variety of choices including the one I know he wants. When I get to the one he wants, Nik will often sign “please.” Then I will say “Oh, you want Mommy to open the box?” for example. “Can you use your words? Can you show Mommy how you say open?” All the while I am showing him the sign so he can imitate me. When he has shown me the sign for what he wants, I ask Nik to use his “nice words.” [One of the ST videos has a great song about Please, Share, Your Turn, My Turn, and Thank You.] He almost always signs “please” or “thank you!”

Much to my surprise and delight, Nik has recently begun imitating the intonation of certain words. When I am expecting to see him signing something, lately Nik has instead been making the tonal sounds of the word as he simultaneously signs “please.” I’m still getting used to the idea that I have to listen more closely to the specific sounds he is making and put them in the right context.

The layering of language in the videos is so effective; the music and printed words, the singing, the video modeling by both adults and children —of all walks of life and abilities, is so powerful that I often find Nik gesticulating wildly in an effort to try to communicate! He knows he is “signing” in his own way. I must confess; it’s adorable to see though it’s not always easy to interpret!

I don’t think it’s an exaggeration to say that these videos have changed our lives significantly. I’ve also not made any mystery of my desire to own the series but they are not cheap!

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Back in May, I filled in at the last minute for a parent-presenter at a conference which focused on how to build successful relationships with and work with practitioners —primarily educators, therapists, and medical professionals— to advocate for causes relating to our children with special needs. It was an honor to have been asked and I wasn’t sure what I had to contribute; the professional I was partnered with had things well in hand. But, I willingly stepped up and served where I was needed. It was a tremendously enlightening and fulfilling day; I was surprised to find out— after the fact— that I was to receive a stipend! My past experience with stipends for this sort of work has been that it’s really a small amount which might cover the cots of gas. Imagine my surprise last week when I received a fairly sizable check in the mail!

I’m not talking about a buy-a-new-wardrobe kind of check but something in the neighborhood of a buy-a couple-of-nice-outfits check.

I finally decided to buy this; it arrived today! I threw in a copy of this, too; it makes me weepy and emotional sometimes!

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When I was a much younger woman —in my wild and impetuous days as a single gal in NYC— I had a friend, Anne. Anne was roughly a dozen or so years older than I and was a single mother raising two young pre-teen boys. Though Anne was far from perfect —she reveled in being right about things (and she usually was) — she had a heart of gold and a righteously protective streak a mile wide. She would offer me the shirt off her back, the food in her cupboard, and a soft place to land when my world came crashing down around me. She was also the first to stand by a friend in need —“fighting the good fight”— or to teach that same friend how to stand up for herself. We lost touch a number of years ago through simple neglect; our paths diverged so greatly after the birth of my son, the geographical distance between us, and who knows what else.

Anne always had a habit which annoyed me to no end; every time we would go out to eat, she would ask me if I wanted to “join the sharers club.” She always wanted to share whatever we each ordered; I, on the other hand, never wanted to share. Call it miserly, greedy, thrifty —I was, after all, a single woman living alone and pinching pennies in a very expensive city— but I really got annoyed. Anne never took it personally though. She would simply smile and say, “Aw, sweetie, you don’t know what you’re missing. One day you’ll realize the joy of sharing.”

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Amid the clatter of emptying the dishwasher —Nik’s laughter echoing through the playroom and into the kitchen— I hear the sound of uneven footsteps and the banging of a heavy object as it bounces along the floor. I turn to see Nik dragging one of his new toys over to the kitchen gate. As he hoists his little cash register toy up over his head, I fly to the gate to keep the toy from crashing to the floor. Nik stops mid-toss and laughs. “Are you all done, buddy? Do you want Mommy to take your toy?” I should know better than to ask a question like that; Nik doesn’t have the communication skills to answer such a query.

I take the toy from him and begin to place it on the armoire near the telephone —still in sight but safely out of reach. Nik begins to vocalize something and gestures at the same time —tapping the fingertips of his right hand into the palm of his left as if he’s making a “Tee.” My eyes widen in surprise. Am I seeing what I think or is it just a coincidence? I’ve seen Nik do that gesture before but assumed he was just copying the video and didn’t really understand the concept.

“Sweetie, do you want to share the toy with Mommy? Is that what you want? You want to play with Mommy?” Nik emphatically begins to pat his palm against his chest —his universal sign for “Yes, please. I really want it.” How could I possibly resist such an entreaty? Picking the toy up from its high perch, I carry it to the sofa and ask Nik to join me. He squeals as he races to the sofa and settles in so close to me that I have to put my arm around him so I don’t accidentally elbow him in the face as we play.

For fifteen minutes we share. We take turns and sing songs. Nik makes free with his kisses —a rare treat lately since he’s becoming such a Daddy’s boy. When he’s had enough, Nik signals to me that we are finished playing by picking up the toy and placing it in my hands. With one final kiss, he slides off the sofa in search of new entertainment. I sit dumbfounded.

Though I’ve not thought of her in a long time, Anne’s image comes to mind. I smile and realize I now understand her gentle words of many years ago. As usual, she was right.

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It is said the darkest hour is just before the dawn. Each day brings with it a new dawn and a darkness which, depending on circumstances, can seem bleaker and blacker than one thinks possible.

Yes, as Drama Mama said in her comment on this post, we do seem to do things in a BIG way here at NiksHouse. I’d give an awful, awful lot to be oh-so-very-small right now. Really, truly, I would.

In the wake of this awful stuff, and on the heels of this amazing stuff —well, it just keeps on getting better and better. Sorry, you couldn’t sense the sarcasm oozing from those words? Let me elaborate.

Today, Nik had the worst experience ever with PT and OT. We had back-to-back appointments this morning after another phenomenal session with Miss M. Nik actually made it to the parking lot again before he lost it. Like last time, he went inside —screaming and crying in protest the entire time. That was the good part. I’m sporting a fat lip tonight as a result of letting my guard down. Technically, I didn’t really let my guard down; it’s more that I didn’t think Nik would react as strongly as he did today; he reached a new high. Or is that low? Whatever your perspective, let’s just say that Nik’s flailing head and Mommy’s lip are not a good match.

Miss D worked with Nik and tried to follow his lead and redirect and distract him when and where she could. They even took a walk outside in the sunshine and fresh air while I waited inside. It went great until Nik saw our car and tried to open the door; when he couldn’t open the door and Miss D led him away from the car —you can imagine the scene in the parking lot. He completely fell apart and just was not able to pull himself back together —even after Miss D brought him inside and I held him and sang to him; he quieted for a moment but then ramped right back up.

We’ve hit a crossroads in many areas it seems. First, and I wasn’t certain I wanted to share this yet but it seems appropriate at this junction, our neurologist wants to put Nik on this medication. Niksdad and I have made it clear that we are not yet ready to go down that road until we have exhausted all other possibilities and ruled out any potential underlying physiological causes for Nik’s pain. And it is pain; I can see a very marked difference between his pain episodes which strike out of the blue and the temper he displayed today.

Today. Ah, it was really difficult to not react negatively when talking with Miss D about Nik’s cognition and behavior. She truly thinks that he “knows what he’s doing” and seems to think he has some measure of control over it. I, on the other hand, do think he knows what he is doing but that he cannot control it —yet. It was agonizing to watch as Miss D held Nik by the arms in a chair and spoke sternly to him as I was putting on my shoes; it was nowhere near a true restraint such as this, but it was enough to make him even more agitated. And, to be fair, she had to hold him in order to keep him from running out the door into the parking lot which borders on a very busy road. None the less, I hurriedly donned my shoes and got Nik into the car.

I have to accept the fact that Nik is growing bigger, stronger, faster, and smarter. With that growth and development, I assume, will come tremendous gains; but they seem to be coupled with equally tremendous challenges in coping with change, communicating his needs, and being in control —or not, as was the case today— of himself and of his environment. And yet, I know that Nik is not an angry and aggressive child; this behavior is fairly new and, until recently, I have usually been able to help him work through it.

I cried all the way home —mostly out of frustration at not knowing how to help Nik navigate his world, our world. For the first time, I had to see the potential for Nik to be a danger to himself or to others should his actions be misunderstood or if someone tries to restrain him. I immediately thought of this book (which I had dismissed in the past as not being relevant to Nik) and wondered if there might be something there to help us. Until very recently, I haven’t seen Nik as an explosive child; he’s never done anything to anyone that has ever given cause for concern —except to himself.

There does seem to be a correlation, or at least I think there may be, between these explosive outbursts at PT and OT lately and a rougher-than-usual afternoon; after mornings like today, Nik doesn’t nap and his tolerance for frustration seems to be nearly nonexistent. This afternoon, he was almost manic in his nap time antics —see-sawing from giddy laughter to flat out shrieking hysteria at still being in his crib. Poor Niksdad was here with him while I was at the grocery store; when I came home, Nik had four new bruises on his head and face —one across the bridge of his nose from pressing his face so hard against the crib slats. Hours later, his forehead still bears the imprint of the mesh netting from his crib tent.

I know that we are not the first family to experience this and we will certainly not be the last. But I’d sure love some thoughts and maybe even a little advice on ways to weather this storm and still keep my sanity —and keep Nik’s beautiful little face intact.

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If music be the food of love, play on; give me excess of
it, that, surfeiting, the appetite may sicken and so die.

~William Shakespeare~

While he may lack the prodigiousness of the Bard, Nikolas seems to be experiencing an explosion of communication lately. Not just in the generic cooing and babbling which he often does, or even the “singing” of certain songs/tunes —though he has been singing more in context to indicate an activity or desire, come to think of it.

No, Nik really seems to be catching on to this whole communication gig. We’re having some mixed successes with the actual AAC devices; Nik is making good progress with sequencing but the whole bit about conscious choice-making with the push of a button? Sporadic at best. I’ve been working with Nik’s speech therapist, Miss M, on finding ways to develop this skill. We are both thinking waaay outside the box here. Nik really is not cued in to visual symbols yet but is keen on music. We’re working on some ideas to incorporate a snippet of music —like a line of a song from a video he likes— only spoken, not sung, and coupled with a visual representation so he has to hit the button if he wants to actually hear the music.

So, when you add in the powerful motivator of music, with Nik’s new found crush on Rachel, and his intense desire to eat… well, you get something like this:

(For clarity: the sign for apple is made by rubbing your knuckle in a small motion in the apple of your cheek. Children who are just learning to sign —or those with fine motor impairments —often use approximations rather than precisely mimicking the sign.)

Now, the video is obviously set up but I did so in response to Nik actively requesting a piece of apple from me at dinner time. TWICE and without prompting!

In addition to the spontaneous signing —in the correct context, too, as he signed “eat” and then “apple” in succession —Nik has also begun mimicking the intonation of certain words or phrases that he hears me say or is learning from the Signing Time videos. Tonight, after I gave him the apple wedge and he started slurping away like there was no tomorrow, I said “Nik, can you say Thank you!” as I made the sign, too. He thumped his chest with his palm (apparently his way of saying “thank you” as well as “yes”) and said “uhhhh-uh” in perfect intonation.

The words may not have been there, but I swear I heard “I love you, Mama” in that simple guttural utterance. Nik beamed at me; I laughed —then wiped away a tear.

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