Sophie’s Choice: Special Needs Version

In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”

Here it is:

Is it better to have your child wake screaming in pain in the middle of the night each night —ostensibly from as yet unproven or undiagnosed food allergies —and be relatively happy, energetic and otherwise fully functional during the day? You, yourself, on the other hand are in a constant state of siege mentality from lack of sleep and worry that there’s something you might be missing.

OR

Would you rather have your child sleep soundly in a drug-induced state which does, in fact, relieve all symptoms of the apparent food allergy? This same medication makes your child lethargic, drowsy and hyper-irritable while also dulling much of his cognitive functioning during waking hours. The result is a day full of constant struggle and frustration for both you and your child.

Which would you choose and why? Really, I want to know.

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Luna

His cries echo in the darkness; the witching hour has begun again. Each night it’s the same routine; he beckons with his plaintive cries as he bangs his head on the side of the crib. Some nights it’s as simple as soothing him with a touch —a gentle rub on his back, a firm pressure over the right side of his head.

Usually, he will settle fairly quickly and hover at the edge of sleep, held there by the warmth of my hand. If I move too soon, the spell is broken and he startles, frantically clutching at my arm, imploring me to stay. Knowing how little he asks of me, I settle in like the sentinel I am, keeping the discomfort at bay with the only weapon I have —my unflinching, consuming love for him.

I enter the room to find Nik sitting, propped up by the side of the crib. His cries sound the same but his rocking —his punching himself as he seesaws back and forth alternately slamming first his forehead then the back of his head against the crib —is different. In the dim glow of the nightlight, I can see the splash of tears on his cheeks, the dark splotches on the sheet where fat, hot, frantic tears have cascaded down in the darkness.

“Mama’s here, baby. Mama’s here. Shhh, it’s ok, lovey. Mommy’s going to make it better.” My throat constricts as I choke back my own hot tears. He needs my strength right now; there will be time for me to cry later. I quickly unzip the crib tent and lower the side, reaching in to pull his little boy form into my arms. He sits with his back against my chest, the lowered wall of the crib between us. I wrap my arms around him and press my head against his.

His head continues to rock forward and back as if he’s seeking some sort of release or some sensory input that will change whatever uncomfortable sensations he is having. I feel the heaviness of his skull as it thumps against my chest. I whisper soft words to him, hoping they bring him ease. The rocking begins to slow as I gently start to sway side to side with him. He squeezes his delicate hands together —“Help me, Mama,” they say to me. It’s a gesture we’ve recently begun to use when he asks for help during play as well. I am momentarily stunned at his presence of mind and ability to retrieve this particular gesture just now.

“Show Mama what hurts, baby. Let me help you,” I croon softly against his hair. My own fat, hot, anxious tears flow now; I cannot hold them in. He puts my hand on his forehead and presses. Instinctively, I begin to rub back and forth in the same gentle motion I used when he was just a slip of a scrap of a baby in the hospital. I would sit for hours, gently stroking across his forehead —willing him to feel the love and strength in my fingertips. Nik sighs and settles against me, his wiry form relaxing in my embrace, head nodding forward —toward the precipice of sleep.

These are the moments I wish he were a tiny baby again so I could scoop him into my arms and shelter him against my bosom. I’d breathe in the softness of his skin and the gold in his hair. My whole body would drink him in and fill him with healing light and strength. I would rock him into restful ease. Instead, I can only will all those things to flow through my arms and my fingertips, hoping he feels it just the same.

Nik slumps against my arm. As I gently lay him down, he startles; reflexively, he reaches for my hand. “Shh, I’m right here, angel. Mama’s right here. I won’t leave yet, I promise.” He curls his long limbs into a tight little ball —one hand tucked between his knees and the other laying upturned next to his cheek. He accepts my hand into his soft, spindly grasp. My thumb rests against his cheek as he snuffles and begins to settle. I can feel the moment when he slips gently over the edge of consciousness.

His deep, even breaths tell me he is at peace —for now. I gently lift the side of the crib and secure the tent before returning to the warmth of my bed. Settling in next to my slumbering husband, I am unable to go back to sleep right away. One thought keeps echoing in my brain: “He asks so little.”

All he wants is the simple, soothing touch of my hand in the fitful, frightful darkness. I want to give him more; I want to make the need go away. I need to make the need go away.

I cannot rest until I do.

***********************************

Wipe those tears away from your eyes
Just take my hand you don’t have to cry it’ll be alright
I’ll make it alright
Don’t let the world get you down
Reach for the love that’s all around
It’ll be alright baby we’ll make it alright

I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong
Cause it’s alright, yeah it’s alright let me
make it alright, make it alright

Stay with me tonight, stay with me tonight
Sometimes the words well their just not enough
Afraid of feeling and in need of love
To make it alright, baby, I’ll make it alright
Where will you run to where will you hide
I know the pain comes from deep down inside but
it’ll be alright baby we’ll make it alright Baby
Let me make it alright, Make it alright
Let me make it alright, Make it alright

Stay with me tonight, stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong

Cause it’s alright, yeah it’s alright let me
make it alright, make it alright
Stay with me tonight, stay with me tonight

It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight.

Alright by Reamonn

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Finding Our Way

I’d like to be able to report that the ringing in of a new year coincided with the ushering out of many of the mysterious pains and ailments which seem to have beset Nik in the past couple of years. Alas, it would be but a fantasy. Instead, I can tell you that he and I were awake to celebrate the arrival of 2009 in the Eastern, Central, Pacific, and Hawaii time zones.

Based on Nik’s behavior at some of those times, I can only imagine the fireworks that must have been going off inside his head. Much of the time was spent with attempts to sooth and comfort Nik out of his face-punching, head banging, back-arching behaviors.

Behaviors. I am so reluctant to use that word to describe what I know, as sure as I breathe, is a visceral response to pain. Behaviors —with a capital B, as denoted by numerous professionals who are unable to see the forest of my child through the trees of his manifestations —don’t wake a child from a sound sleep with a violent, panicked and self-injurious start. Behaviors don’t respond to Advil or to homeopathic remedies for nerve irritation.

No one can really say what’s going on with Nik at this point. Even his beloved Doctor Mary is scratching her head in bewilderment. Though she is willing to explore any avenue we think might be helpful, her clinical knowledge base is, by her own admission, too broad to be able to hone in on which of the myriad tests to order. Given the difficulty Nik seems to have putting on weight —he’s not gained but a half pound in six months —and some other symptoms including manifestation of Raynaud’s-like characteristics, we need to rule out any endocrine or metabolic causes (likely autoimmune causes already being ruled out by testing). Our next step is to find an endocrinologist for a consult.

Our fabulous neurologist is also willing to explore any number of possibilities. He’s mentioned some things which seem to fit and make some sense but which also require the use of systemic medications which affect the central nervous system. Granted, the medications in question aren’t necessarily as potent as the seizure medications Nik was taking but they are not without risk. It’s immaterial; history has shown us that Nik does not respond well to any type of medicine which alters the functioning of his central nervous system. Niksdad and I loathe going down that road blindly; we want to explore the metabolic and endocrine possibilities first —as well as any other non-pharmaceutical —or more chemically benign— options.

It’s not we are against medications; truly, we’re not. We just know that Nik’s body doesn’t handle them well; we want to avoid any scenarios in which we are left wondering —yet again—whether the symptoms are part of the underlying issue or are side effects from the treatment. And, frankly, Nik’s had more medicines pumped through his body in the past five years than most people take in a lifetime. The strain on all his bodily systems has been enormous.

In the meantime, though, it is a daily watch under Damocles’ Sword. The watching and wondering if today will be the day that Nik’s pain will not respond or if it will last longer than a few minutes at a time. Will he be able to focus on a task or play for more than a few minutes before he is scrunching his eyes and vigorously poking at them? Will it be during the day or in the middle of the night that the searing pain causes him to thrash and howl as he bangs his head with his fists or with a toy? Will today be the day he stumbles blindly to fall, yet again, head first into the hard edge of a piece of furniture.

Or, will today be a day free of the mysterious sensations which cause him to claw at his head to the point of rawness? Will he play with carefree abandon at the park, climbing like a little mountain goat? Will he sing the sounds of letters to me as we play together on the floor, building towers toward the sky? Will he feel well enough to eat me out of house and home?

I know that no one’s days are ever fully predictable; they are, however, by and large, filled with routine which bring comfort or respite. Time in which one is able to take a moment to breathe easily and know their child is safe. Our days used to have a moderately predictable rhythm to them. Now, the only thing I can predict is that I can no longer predict.

Nik is showing signs of a tremendous developmental surge; he’s learning more letters by sound and beginning to identify them on sight. He’s showing marked interest and facility in eating by mouth. His motor skills are meshing nicely with increased depth perception to allow him to play in ways he hasn’t been able to. He’s showing some slight comprehension of numbers —enough to be able to successfully show me certain ones on request about half the time. His desire to play with me or with Niksdad has increased to the point that it might border on obsessive; we have to plot our escape from the room sometimes before he can latch on to one of us.

While Christmas presents don’t hold any real significance for Nik, he’s shown a great interest in unwrapping the gifts and understands that the item inside the paper is as fascinating as the paper can be. He shows eagerness to explore all of his new toys, though his dump truck is the hands-down favorite. Nik has even been willing to allow me to push and cajole him into persisting with a game or task until it is completed. Not always willingly, but to completion. Then we celebrate his success and he is happy and willing once more.

We continue to make progress in substituting his green chewy tube for toys in his mouth when he is working or playing. He will now actively seek out “chewy” when I ask him to and will use it for several minutes before he reverts to biting on a toy. Small steps, big gains.

I confess there is a part of me that is very worried about the effect of systemic drugs on Nik’s abilities. His motor abilities will always be in question due to his underlying cerebral palsy; is Nik unstable on his feet some days more than others because that is the nature of his CP or is it from something else? His cognitive abilities have blossomed since we took him off of the seizure medications and have been a source of great delight —to him as well as to us; Nik recognizes the progress he’s made and tries to build upon it. I see the improvement in his ability to retain and retrieve certain kinds of information without as much scaffolding or as many prompts as he once needed. I worry that the medication would take that away from him and create frustration in place of his sense of self confidence.

So, yes, it is a new year filled with new hopes and dreams; but, as those ghosts of the season do, they carry along with them the baggage —the sticky ectoplasm— of all that has come before. I cannot seem to find the promise of the new under the burden of the old. And yet, I know it exists; I know it will make itself manifest in due time. That is simply the way of the universe, isn’t it?

That’s The Way of The World
(Maurice White/ Charles Stepney/ Verdine White)

Hearts of fire creates love desire
Take you high and higher to the world you belong
Hearts of fire creates love desire
High and higher to your place on the throne

We’ve come together on this special day
To sing our message loud and clear
Looking back we’ve touched on sorrowful days
Future pass, they disappear

You will find peace of mind
If you look way down in your heart and soul
Don’t hesitate ’cause the world seems cold
Stay young at heart cause you’re never (never, never) old at heart

That’s the way of the world
Plant your flower and you grow a pearl
A child is born with a heart of gold
The way of the world makes his heart grow cold

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Free at last

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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Nik’s scan

Today’s CT scan got off to a slightly bumpy start. When we discussed with the sedation doctor what specific concerns we were trying to rule out —one of them being chronic mastoiditis— he told us the test that had been ordered wouldn’t show us that. It seems our pediatrician was under the misapprehension that a regular head CT scan would show the mastoid process and surrounding area. The radiology team told us it is a common error made by many general pediatricians; we eventually got it straightened out and got both scans done.

Nik was a total champ and handled things really well. When he started to go into panic mode in the sedation room, we managed to find ways to occupy him. Who knew that velcro falls into the same broad category as doors?? Yep —they both open and close. Nik was endlessly fascinated with a small blood pressure cuff to the point that he held on to it right up until the time he went “lights out!”

They let us stay with Nik during the scan (we had to wear our lead aprons) and it was all done pretty quickly. The hardest part for me —honestly— was trying not to cry as I watched my little guy lying so still on the bed of the scanner. I couldn’t understand why it was so emotional for me. Then it hit me; in spite of all the surgeries and other sedated procedures Nik has been through, every other time we have simply watched him get pleasantly loopy and then handed him over to the care of strangers. I never saw him laid out like he was today. I must confess that it was a little unnerving.

Nik came through recovery like a champ, too. One minute he was out cold then —WHAM! —he was sitting straight up and wide awake. Not exactly coordinated but awake. Again, velcro came to our rescue when Nik got restless but wasn’t quite ready to leave. We were on our way home shortly after 1:30 this afternoon.

On the way home we had to make some stops at places like Trader Joe’s (it’s the nearest one and we live an hour south of the hospital). Nik did well and was his usual charming, chattering self. I think our check out person wanted to take him home with her!

Once home, Nik was pretty much back to normal. Doctors do not believe us when we say that Nik metabolizes things incredibly quickly. Nik’s balance and coordination —and personality— were back to his normal baseline within just a couple of hours after he woke up.

So we took him swimming!

Hey, why not?? It’s not like he can swim unassisted and it was hot as blazes today. My sister and her kids were out so we had the pool all to ourselves! Almost like a mini vacation —except not nearly long enough!

So now, as before, we wait.

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Waiting of a different kind

Finally! Tomorrow morning, at approximately 10:30 Eastern time, Nik will have a CT scan to determine if there is anything going on within the actual bony structures within his head (not just the skull proper) which may be causing his intermittent bouts of pain, poor equilibrium, swelling around his ear, etc. You know, the stuff the docs haven’t figured out yet.

As with any major diagnostic test we’ve gone through with Nik —and there have been so many that I have actually lost count —I have mixed feelings. I hope they find something which would lead to an answer; to resolution. Yet, I hope they find nothing.

Sigh. There are no easy answers in this gig, I suppose.

Send prayers, love, voodoo, good juju…whatever works. Please?

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Unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Natasha Bedingfield ~Unwritten

On top of the recent escalation of Nik’s mystery pain, he’s begun having a really difficult time lately at PT and OT. We have no idea why; I’ve been with him nearly every single time and if I wasn’t then Niksdad was. Nik used to laugh and clap and squeal with glee when we pulled up in front of the office. For the past three weeks though —whether in conjunction with the escalation of his pain episodes or for some other reason entirely —Nik has had complete meltdowns each time we go.

Things progressed from Nik screaming and crying as soon as we walked through the door —and proceeding to then thrash and slam his head on the (carpeted) concrete floor— to having a complete screaming, crying meltdown in the car as soon as he realized where we were going (based on the route we took). On Tuesday of this week, Nik lost it shortly after we left home; it’s a six mile trip each way. We decided to discontinue his playgroup because it got to be so bad; I think he was freaking out some of the other moms and one or two of the kids, too.

Anyway, yesterday was no different —at first. As soon as we pulled out of our neighborhood and onto the main road, I saw Nik’s face scrunch up in the pre-meltdown expression. Since he’d been in a great mood thus far all morning, I knew it wasn’t from pain; I started to distract him by singing songs from Signing Time videos —over and over and over. It worked to not only distract him but it got him laughing and clapping and trying to sing along. (You should hear his rendition of “…Signing Time with Alex and Leah, come and play…;” it’s utterly adorable!) I thought I had found a magic solution —until I pulled into the parking lot.

Interestingly enough, Nik cried and screamed but he cooperated with me. He didn’t kick and thrash and roll on the ground as he has done in the past few weeks. He sat down in a chair at my request, took off his shoes and coat, and then ran screaming…to the playroom! There were many bumpy and hysterical patches but, overall, Nik did really well. Miss D, our awesome OT who is now fully certified in sensory integration diagnosis and techniques, followed his lead and found ways to turn each struggle into a new game. By the time we left, Nik was smiling and happy. He spent more time playing one-on-one with Miss D and really paying attention to her —her eyes and her face especially, and he even gave her a kiss when we left! Then he turned around and wanted to go back inside again! So we did that for a little bit; I really wanted our leaving —and Nik’s experience of entering the building, too —to be joyful for him.

I am happy to report that it worked. In fact, Nik spent the entire rest of the day being giddy and giggly, affectionate and funny, and as cooperative as any willful toddler can be in one afternoon. In short, the rest of the day was delightful! But it gets better…

We had a feeding therapy session in the afternoon; Nik’s nap was cut short —always a crap shoot —and it was a decided change in routine which I wasn’t sure Nik would handle well. You guessed it; I was wronger than wrong! I think I can say without reservation that this was his best session ever. EVER.

Maybe it was our visit to the neurologist on Thursday, followed by the bloodletting —er um, visit to the lab— for a multitude of tests. Or perhaps the moon and stars were in perfect alignment. Whatever the reason, Nik was a total superstar with Miss M. To quote Miss M, “Nik’s the best speech therapist I’ve ever met!”

You see, Miss M has been working with Nik to teach him the necessary oral motor skills to actually take a bite of food. Progress has been slow. It’s only been very recently that Nik would even tap an apple wedge against his top teeth, let alone let any other food come into contact with them. He still guards his lower teeth with his tongue even when he’s sipping from a straw. We’ve been doing exercises with his chewy tubes to strengthen his masseter muscles as well as to try to reduce some of his oral defensiveness.

The game plan has been to gradually move through stages:

1. accepting the tube near the back of his jaw, followed by;
2. five consecutive bites on the tube at he back of his jaw on each side, then;
3. inserting something crunchy like a potato stick inside the tube and repeating the bites at the back of the jaw to introduce the sensation and sound of crunchy solids.

The idea is that Nik would gradually tolerate the sound of the crunch —which startled him terribly once before— and allow him to get the tiniest bit of dust-like crumbs on his tongue. This would then lead up to:

4. taking multiple bites on the tube and crunching the contents and then;
5. voluntary biting in the front of his mouth, followed by;
6. biting and crunching along the full range of his mouth.

You can see where this is going, right?

If I told you that we’ve only recently mastered step two, you might understand why Miss M and I were both utterly speechless yesterday when we introduced step three and Nik took off like a champion thoroughbred and raced through the entire process —all the way to step six —completely independent of any coaching or input from Miss M! Multiple times.

As if that weren’t enough, Nik showed off his new growing sign language vocabulary for us; he can now sign eat, apple, please, thank you, more, shoes, and cat. He is close to mastering share, cheese, and bye-bye. Yesterday, we added another emerging sign to the list, too! But let me back up a bit, first.

Nik’s current manner of asking for things is to grab our hands and direct us toward the object he wants; sometimes he wants us to perform a task such as opening the buckle on his lap belt or taking off his shoes. We are trying to pair Nik’s non-specific requests with at least an acknowledgment. For example, when Nik drags my hand toward his lap belt I will say “Oh, you want Mommy’s help? If you want Mommy to open the buckle show me ‘please.’ Sign ‘please’ for Mommy.” As I say this I am also showing him the signs for open and please. (Nik doesn’t sign yes so we use please in its place.) When he signs please by patting his chest, I open the buckle and praise him.

The most important element is that we make Nik acknowledge and confirm what he wants. He is becoming much more consistent with this. When and where we can, we try to introduce new signs. So when he “asked” me to open his lap belt yesterday at the end of therapy, I asked him to show me open —fully expecting that he wouldn’t but that we would make a few attempts before we defaulted to please. You could have knocked me over with a feather when Nik responded with a sign which is clearly his rendition of open and then followed it with the intonation of the word as well!

Yes, I got teary.

Meanwhile, Miss M needs to completely rewrite all of Nik’s feeding goals and some of his speech goals. His augcom devices have finally been ordered and should be in soon. At this rate, I suspect Nik may outgrow the need for those specific devices pretty quickly. We are going to start working on photo cards soon, too.

In other areas, I think I’ve mentioned before that Nik is beginning to really cooperate with simple directions such as sit down, give it to me, give Mommy a kiss, come here (not as consistent but I think that’s more about willfulness!), and the like. He is also making big strides in self help skills such as putting on socks and shoes —with help, of course. Nik also practices taking off and putting on his own shirt nearly every chance he gets —sometimes with very humorous results.

So, as Kristen reminds us in this eloquent post, our children’s stories —indeed, all our stories —are still largely unwritten. Nik’s will, I suspect, have multiple plot twists and more than a few cliff-hangers before it’s finished. Just when I think I am in control of the plot, my main character throws me a curve. But then, I wouldn’t enjoy the ride half as much without a little excitement, right?

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Inexplicable

It is difficult for me to write these days; I struggle to find both the time and the words to express all that is going on. Rather than giving snippets out of context, I simply don’t write. And yet, I feel like I have left people hanging, wondering what else is going on, why I am so quiet lately.

This post is a pretty accurate depiction of events which are now occurring multiple times daily; Nik’s mysterious pain episodes seem to be changing, taking on a demeanor that, frankly, I don’t like. The frequency has diminished, that’s true, but the duration and intensity have both been ratcheted up significantly. And the aftermath —the cursed aftermath —now leaves Nik limp and lethargic for a while. Whereas he used to simply shrug it off and bounce right back, Nik now needs a good twenty minutes or so of very quiet, low-key activity before he can resume his normal hijinks.

[NB: We have an appointment with the neurologist tomorrow morning to discuss this again. Also, we have finally gotten our pediatrician to order a CT scan and numerous blood tests to rule out any number of possible —but “statistically unlikely”— causes for these awful episodes.]

The disturbed sleep patterns also continue; their frequency seems to escalate as the intensity of the daytime episodes increases. As I joked with my mother on the phone today, Nik and I are both sporting such dark circles under our eyes that it’s in danger of becoming a permanent family characteristic. I joke, I laugh and make light because it is how I have dealt with such things most of my life.

I don’t have to tell you how I truly feel; if you have read my blog for even a short while —and if you have children of your own, be they with or without special challenges or circumstances —you know the pain and frustration I am feeling. So, instead of dwelling on it, I choose to shine the spotlight on the positive and wonderful things that are happening with Nik. That, too, is my coping mechanism —deflecting the attention away from the things I don’t want to think about or deal with. But know that for every wonderful, glowing post I write —about Nik’s learning a new sign, making some tremendous cognitive or social/emotional connection, or some funny thing he’s done recently —there are just as many I could write about the sleepless nights, the pain of not being able to help my child, or my utter frustration with a medical system which places disparate faith in a parent’s intuition, insights, and observations.

Sometimes, when I feel too full of the emotions, too raw from the continuum of pain-filled days, sometimes I can find the words to share it and I do. In the sharing of my pain, my burden is temporarily eased; I can feel the weight shifting onto the shoulders or into the outstretched hands of my sisters —and brothers— on this shared yet unique journey. When I have regained my strength and my perspective —my pluck—I reach out my hands to hold you, in turn.

Lately, I have felt like a bad blogging friend; my thoughts are often scattered as I read a post so I bookmark it to go back to and then forget to do so for days on end. I’ve been remiss in following up on comments left on my blog or memes and awards. It’s not that I don’t care, truly! It’s just that these latest weeks of escalation have just kicked my ass around the block and back again. So, I beg of you dear friends, don’t let go of that lifeline you’ve been holding for me. I’m struggling and may be down, but I’m not entirely out…and I’ll be back.

Maybe even tomorrow?

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Solace

He throws his toy to the floor with a piercing shriek and launches himself into my arms. His sobbing begins immediately as he buries his face into my shoulder as if my body can block the devastating sensations which took him by complete surprise. Knowing full well that it cannot, I shift his little boy form in my lap and rest his head against my sternum. I am nonplussed at his new found awareness of my ability —and desire— to soothe him.

His slender frame shudders with sobs as he tries to connect his tightly clenched fist with the side of his head; I press my hand against his ear as a buffer. The blows from his deceptively small hands reign down hard upon my knuckles; I press my hand harder against his skull hoping the pressure might ease the lancing pain. It seems to help some as he slumps against me, whimpering.

He presses his body tightly to mine; his lithe legs dangle over my thigh. I look at him and marvel at the strength in his slender frame. With a shuddering breath, he begins weakly to hum our current sing-me-a-song-because-you-love-me tune —“You are my sunshine, my only sunshine…” I begin to sing softly as I rock him back and forth in my arms.

We sit in the middle of the floor, fused together like Siamese twins. We are joined —at the heart, the belly, the chest —by our mutual need; his to be comforted and mine to wash away his pain with the flow of my tears against the top of his downy head. He presses his face deeper against my bosom and slumps forward over my arm —spent and content to be my baby once again.

Making up new verses as I go along —“You are my angel, my precious angel. When you’re unhappy I feel blue. When you are crying, my heart is breaking. Mommy will take care of you” —I sing until I am nearly hoarse. I have held him and rocked him until my arms are leaden. He is so still against me that I wonder if the motion of rocking has put him to sleep. I pause in my singing to tip him back a bit so I can see his face.

His eyes flutter open as he lets out a deep sigh. He lifts his face to mine with a smile and begins to hum the tune I have just finished. I gently press a kiss to his clammy forehead and tighten my embrace momentarily. He squirms a bit and slips out of my lap to pick up his toy as if the last twenty minutes hadn’t happened.

His pain is erased —transferred, actually. I feel a dull ache as my heart constricts momentarily. I swallow hard and fight the tears. Who will soothe my pain away? Whose lap can I climb into for solace?

There is no one and so I write.

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Too much to be wordless this Wednesday

I’m still stewing on my thoughts and reaction to Autism: The Musical and hope to share them with you soon. Meanwhile, here’s a rambling update on life in Nik’s house lately…

I am thrilled to report that the duct tape experiment has been a rousing success! Not only has Nik not tried to wiggle his way out of the tape (and, therefore, his pajamas), he’s become quite enamored of the process! I can’t help but wonder if the slight snugness of the tape around his upper torso provides some proprioceptive input that is comforting to him. By the third day of taping him into his pajamas, Nik began to willingly put his hands up in the air to assist in the process! It’s really very cute to watch.

I won’t question the whys and wherefores; I will simply say that my washing machine no longer feels abused on a daily basis!

Of course, to every yin there is a yang, to every up a down. Though we’ve managed to quell the Houdini and Poocasso behavior, there has been an increase once again in Nik’s mysterious pain episodes which seem to strike without warning. There have been nights when the only thing I could do was hold Nik in my arms in the aftermath of some pretty horrific head-banging, face-punching, writhing episodes. One night, through his tears, Nik started to hum his favorite song from Mary Poppins; the poor dear was trying to soothe himself and asking me to help!

Niksdad and I are absolutely certain it is not seizure activity; we see the neurologist this Friday and will discuss other possibilities to explore. I still think it has something to do with some type of cluster headache or other vascular activity. Nik gets this odd swelling of the area over his right mastoid process —almost as if his skull is swelling but it isn’t. Mastoiditis has been ruled out —the symptoms are too erratic and they just don’t quite seem to fit —though no CT scan or x-ray has been done to definitively eliminate the possibility. Niksdad and I wonder if it could have something to do with his lymphatic system as he’s been getting so many infections, too.

The search for signs of intelligent medical life to aid us in solving the mystery continues…

In spite of the ups and downs of these sudden pain attacks, Nik is thriving. Each day brings some new and highly amusing thing. Lately, it has been an impressive display of his age-appropriate evasive tactics when it is time to get in his chair for a meal (and at bed time, too). Well, that and some highly impressive (and rather unorthodox) motor planning and following instructions. See for yourself in the video below. (Sorry, it’s kind of long but I cannot edit QuickTime videos in Windows.)

Now, please bear in mind that this is the same child who just started walking last August, at the age of 3 and three-quarters years. The same child who is considered legally blind in one eye. The same child who was once labeled as having diminished mental capacity. When I look at this video, I marvel at the progress Nik has made and I am reminded of the miracles that can happen with love, determination, and faith.

There are some things no one can ever know or predict; parents who simply swallow whole the dire pronouncements of doctors about the future of their children are, in my opinion, only serving to ensure that bleak future comes to pass.

In a related vein, there’s lots of advocacy-related stress going on behind the scenes here the past week or two; continuing to negotiate with Medicaid to provide coverage for Nik’s therapies —as well as pushing for an increase to help boost some emerging skills and develop some critical new ones, finding the right medical avenues to explore for answers to the mysterious episodic pain, and —as of Monday —a struggle to get Nik’s communication devices. It feels like we’ve gone from cruise control on the open road to stop and go traffic in rush hour —say on I-5 or the beltway! Days which once seemed wonderfully smooth and easy are suddenly filled with mountains of paper work, follow up phone calls, more paper work, more phone calls, and efforts to keep my cool in the face of idiotic bureaucracy. But I’ll save that for another post —one which may require a bit of a preface.

There’s more good stuff going on…but I’m going to have to write that in yet another post. LOTS to catch up on…

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ETA: Oops, thanks Kristen for asking “How you doin’?”* I forgot to mention that my fall down the stairs last week seems to have left me none the worse for wear. I’m pretty much back to my old self —wrist and all.

(*For some more really amusing Joey-isms, click here.)

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