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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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