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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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How much time do I spend in turmoil, wailing and gnashing my teeth, and wondering—

“Will he ever…?”
“Can he even…?”
“Why doesn’t he…?”

If I stop to remind myself that Nik does things in his own time, I am able to let go of the anxiety; Nik has shown me countless times that he is capable but he must find his own pace, his own rhythm. And when he finds that groove —that perfect chemistry that only Nik can know —magic happens.

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So many babies who have some sort of special medical needs from birth or shortly after —be it from extreme prematurity, genetic anomaly, or some sort of trauma or insult surrounding gestation or birth— end up being given so many medications; this one to stave off infection, that one to keep the heart from stopping periodically, another one to help with digestion, seizures, blood clotting —and so on. The longer term ramifications of these medications can not ever truly be known though reasonably logical conclusions can be drawn from years of accumulated data. Still, when a parent is faced with life and death choices, it can be more than difficult to weigh and measure the long-term effects of a particular drug against the permanence of losing one’s child.

One is forced to make imperfect choices with little objectivity.

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Nik began having absence seizures when he was roughly fifteen months old. At first, we thought they were simple staring spells —Nik’s little way of finding respite from the bombardment of sensory input which accompanied the revolving door of therapists and visiting nurses to our home and frequent trips to one or another doctor in the cadre of specialists for all of his -isms, -itises, and –oses. It wasn’t until he was two that Nik finally got an official diagnosis and began yet another medication.

We went through a few different meds before we found the one which seemed to be the most effective with the least negative side effects. Little did we realize that the cure would also bring about a new problem. Apparently, as we gradually ramped up to the appropriate maintenance dose, Nik began to experience a marked sense of disorientation and dissociation. He felt funny; his balance and coordination —already grossly delayed—were significantly impaired. Because we had no basis for comparison, Niksdad and I did not realize it.

With each incremental increase in the medication Nik felt the fuzziness invading his head. Because he couldn’t tell us with words or signs, he told us in the only way he could; he began waking with screams and howls as he shook and swatted at his head in his attempts to make the sensation go away. We never made the connection between the medications Nik received at dinner with the behavior which occurred hours later. The onset was so gradual that we thought there must be some underlying physical issue; something else had to be causing our son’s horrific discomfort.

A month after Nik’s third birthday, another medication was prescribed for the headaches we all— the doctors included— were certain were from some other source. The second medicine enhanced the effects of the first; a vicious cycle ensued. As we continued to increase the dose of the first medicine, the second one magnified the intensity of its effects on Nik. Nik’s once rapid progress with gross and fine motor skills seemed to stall; his previously voracious appetite completely disappeared. The smiling, laughing child I knew wasn’t replaced with something or someone else but his attention span began to dwindle greatly. Nik’s autistic characteristics became more pronounced; they were there all along but they became the first thing we saw more and more.

Can I prove any of this beyond a shadow of a doubt? Unfortunately, no.

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Though he loves to brush his teeth at home —sitting on my lap as we sing a song about brushing — Nik has always hated our trips to the dentist. I don’t blame him; he has to be restrained by strangers who don’t want to take the time necessary to allow him to explore and find his comfort level. Unfortunately, we don’t have a choice about dentists right now so we try to make the best of it; I still have to argue though to be allowed to hold Nik on my lap instead of sacrificing him to their care.

Having discussed the issue with the neurologist and the pediatrician, we recently decided to try a low dose of diazepam (valium) to help Nik relax a bit; if he’s not anxious about it he won’t fight, right? Wrong, wrong, wrong. WRONG.

You know how some doctors tell parents not to give their kids Benadryl or cold medicine before flying because it can have the opposite of its intended effect? That’s called a paradox response. Yeah, that’s what happened to Nik when he got the drug in his system. To say it wasn’t pretty would be a gross understatement. Picture your sweet little child strung out on PCP (Angel Dust); you’ll get the picture.

I tell you this not to garner sympathy but to illustrate a point. At the peak of his medically induced rampage, all of Nik’s previous behaviors relating to his episodic pain returned in full blossom —and then some. It was one of the worst things I’ve ever witnessed; doubly so because I knew that I had caused it. I knew that it was simply Nik’s mind and body reacting to the horrible, disorienting sensations caused by the drug; the knowledge brought no comfort.

Sobbing as I drove the 54 miles home with my feral child, I had a flash of insight.

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When we tried to increase Nik’s second seizure medication a few months ago, in preparation for weaning off the first one —the one we worried was causing headaches— Nik’s episodes of horrifying pain and related behaviors drastically increased; his temperament became more volatile and his meltdowns more frequent and more intense. As soon as we realized this and we reverted to the status quo Nik began to improve. After numerous discussions with the neurologist, we decided we should try to wean Nik off of the second medication instead; it has more long-term negative effects on cognition and liver function.

The change was not instantaneous but it was rapid. As we gradually decreased Nik’s daily dose of the medication, we began to see marked shifts in Nik’s attention span, his interest in social interaction, and his desire and ability to initiate play. With each decrease in dose it seems we have witnessed a blossoming of Nik’s personality and intellect; his keen problem solving skills have reached new heights. Nik’s motor skills and communication have been catapulted to a level we had not expected to see for quite a while longer. But the best and most important change we have seen?

The complete cessation of Nik’s episodic, debilitating pain. (Knock wood!)

Can I prove this theory beyond a shadow of a doubt? No, again. But the explosion of cognition, motor skills, and rich social interaction that I see in Nik on a daily basis tells me all I need to know.

Sometimes magic happens all on its own. Sometimes it needs a helping hand.

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Celebrate good times, come on! (Let’s celebrate)
Celebrate good times, come on! (Let’s celebrate)

There’s a party goin’ on right here
A celebration to last throughout the years
So bring your good times, and your laughter too
We gonna celebrate your party with you

Come on now

Celebration
Let’s all celebrate and have a good time
Celebration
We gonna celebrate and have a good time

It’s time to come together
It’s up to you, what’s your pleasure

Everyone around the world
Come on!

Yahoo! It’s a celebration
Yahoo!

Celebration ~ Kool & The Gang

Lots to celebrate here this week!

Our anniversary. Hurray! Niksdad and I actually got to go on a date on Friday night —candles, wine, good food, and a drive in the country to reminisce about the wedding night we spent in this quaint little bed and breakfast. It was really wonderful to reconnect and relax. Of course, we did talk about Nik’s CT scan results —a lot. But we had a lovely time. I think it was the first time we’ve been out for a nice dinner (and without Nik!) since before Nik came home from the hospital. Hmmm…I think we need to get out a bit more, don’t you?

Family. In my family, the span from Mother’s Day through the Fourth of July is insane. In addition to the Mother’s Day/Father’s Day/Independence Day celebrations, we have eight birthdays and four anniversaries. So, this past Sunday we got together at my sister’s for a family barbecue and pool party. This year, to add to the excitement, we also celebrated Niksdad’s passing his LPN board exam, my eldest niece landing a great internship she’s been hoping for (in the music/recording industry), and my sister’s engagement! It’s her second time around; we all really, really like the guy she’s marrying. I especially like him because he adores Nik and makes sincere efforts to meet him where he is. He doesn’t ever ask stupid or insensitive questions and he’s always willing to lend a hand watching Nik so we can eat, swim, or whatever it is that everyone else is doing that we usually sit on the sidelines. He’s a great guy and I’m very happy for my sister.

Changing Insurance for Nik. Hey, this is a biggie! We changed managed care organizations (MCO) through Medicaid and have recently discovered some pretty nifty perks. Our pediatrician is apparently rated as a “gold star provider” which means that any referrals written by her do not require any authorization. That’s right —NONE. So those prescribed twice weekly PT and OT sessions which the previous MCO denied on the basis of “Nik should be in school so school would be providing these services” (never mind they’ve been deemed medically necessary and truly are)? Covered without a blink of an eye. We start our new schedule with Miss D and Miss T in just a couple weeks and we are all so excited to see how Nik blossoms even more as he gains new skills.

Nik is thriving and happy again at PT/OT. Don’t know what the turning point was but Nik has now decided he loves PT and OT again. No more tears. In fact, yesterday we couldn’t get him to leave! He actually ran away from me when I told him it was “time to go zoom-zoom home.” He’s been so much more engaged and lively; he’s really been seeking interaction with people so much more lately.

Our visit to the ENT today. You know, sometimes we get so accustomed to all the weird, unusual things that go on with Nik (well, okay, in our defense his history is pretty chequered!) that we tend to see bogey men everywhere we turn. And, given the questions we’ve been asking for a year now about Nik’s head pains and ear problems, it was a natural leap to make when Dr. Mary called on Friday afternoon. But this time, it really isn’t a big deal after all. Normal, ordinary childhood ear stuff.

Turns out that none of us knew Nik’s myringotomy tube in his left ear had worked its way out (which is normal) quite some time ago. Unfortunately, Nik also has a significant propensity toward fluid build up in his left ear. And his adenoids. In other words, as the doctor put it today, “If you do a scan on a kid with a snotty nose, stuffy sinuses, and fluid in his ears, you can get a scary looking scan. But you have to look at the clinical presentation, too.” No signs of infection —whew! But then, we kind of already knew there was no infection.

So we’ve discontinued the nasty antibiotic. Not a moment too soon, either, since it’s begun having awful gastric side effects after just a couple of days! But we are looking at surgery to put in new tubes and to remove Nik’s adenoid. It’s not a guarantee that Nik won’t have pain or ear infections —there is so much surrounding the ear that it’s possible the pain is actually referred from somewhere else —but it will most likely minimize the snotty sinuses and will help with Eustachian tube function so the fluid shouldn’t build up so much. It’s not a magic answer —we didn’t expect one— but it does give us a measure of comfort we didn’t have before. Niksdad and I agree; we would rather have this surgery than put Nik on yet another medication which has significant long-term repercussions and side effects.

And, frankly, since we’ve decreased his daily Depakene level by a third, we’ve seen such a tremendous shift in Nik’s attention span and level of interest/engagement that we are loath to give him something which might dull his senses again. We really enjoy the little boy that is starting to emerge and can’t wait to see how he does as he begins to feel better.

As for all this celebrating? I feel a bit rusty at it but I’m sure I’ll get the hang of it again.

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Niksdad, LPN — kinda has a nice ring to it, don’t you think?
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Edited to add —
I wish I had a funny anecdote to relate about how Niksdad found out. Alas, it was as simple as Niksdad calling one of his classmates (from the hospital today) because he was sure he had to be looking at the wrong website.

Um, yeah. That’s my “absent minded professor” husband for you! He was looking on the testing website when he should have been looking on the site for the state licensing board.

Where it had been posted since Friday afternoon!

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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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No time to write about it yet (hopefully later today) but I had to let everyone know that our week ended on a super-high high. Well, okay , except for the getting up at 3:00 a.m. to change a poopy diaper; but even that had some positive merits because Nik was able to “sing” his clean pants song to tell me what he needed. Um, not that I couldn’t smell –er, uh tell.

So, this is just a teaser post. But believe me…what’s coming is soooo worth the wait! (Did I just jinx myself?)

Did I mention the sun is shining today, too? After days of cold temps and rainy, gloomy weather.

I’m keeping my fingers crossed.

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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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Whatever you want to call it, I call it music to my ears. If I could bottle that sound and drink it I would be the world’s happiest drunk!

Alternatively titled “Song for a spitfire before burning out at dark”

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