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Archive for the ‘special needs’ Category

My child’s life has been wrapped up in hospitals since the day he was born. Ironically, it’s the place he is most at ease; he knows the equipment and routines. He’s not afraid to tell a doctor they didn’t look in his ears or to ask the phlebotomist for her tourniquet. (Relax, our answer is always a resounding NO!) He knows how to work the otoscopes and the blood pressure monitors, the pulse oximiters and the electronic scales and where they keep the disposable caps for the thermometers. It’s all just second nature to him and we don’t give it much thought.

We’ve walked this hallway what feels like a million times through the years— many of them as recently as this past week. The pictures on the walls haven’t changed, the faces are pretty much the same. It works for us– for him, the routine, the predictability and familiarity. He knows Ms. M at the coffee shop who waits patiently as he orders his “cookie chocolate” with his speech device. Mr. John, the valet attendant, who always gives a smile and a fist bump and who never, ever makes it a problem if we want to play on the playground even after the car arrives. My little ambassador knows the nurses in varying departments by name and remembers the color of the stethoscope everyone wears. Dr. C? Red. Dr. D? Black with tape. Ms. T? Green…and so on.

Today, we’re winding down from a very long morning of appointments on the heels of a week’s worth of appointments and disrupted routines. I can tell he’s off kilter and out of spoons. I’m kind of feeling the same way. It’s been a hard break at the end of the school year and he’s missing not only his routines and outlets, but his very best school friend.

Him: Marcus, today
Me: No, baby, not today. (*crack* there goes my heart breaking just a little bit more with each repetition of this exchange)
Him: Marcus, school tomorrow.
Me: No, baby, not tomorrow.” *crack*
Him: Maybe.

My beautiful, loving boy. So hopeful. So resilient.

He stumbles against me periodically as we walk, loosely holding hands; I can feel his weariness. He looks longingly at the wagons of the other children going by. I silently berate myself for not getting a wagon for him; he’s tough but even he has his limits and his legs have been aching so much lately. If we weren’t in the home stretch heading off to get our requisite cookie for the long drive home, I would absolutely get a wagon.

He stumbles again and I feel him pull away from me, his hand slipping from mine. Suddenly, I’m on high alert as he darts to one side. Instantaneously, I scan the area and evaluate the possibilities of where he is heading. I see an office door tucked into the wall up ahead and dash to cut off his inevitable entry. I beat him to the door which wasn’t his target after all. His destination was something I hadn’t even contemplated.

He stops suddenly and cranes his neck upward to look at one of the many images which have become so much a part of our, my, unconscious mind. His spindly arms reach upward toward the mural – almost in supplication. One hand on the image, he is utterly transfixed. Relief washes over me. “Nik, what on earth—“ I begin. Then, I see the image on the wall. I am unable to breathe and I feel slightly dizzy. I am suddenly sucked into a vortex. Unbidden, hot tears course down my cheeks; I couldn’t stop them if I tried.

I watch as his delicate fingers reach up to touch the face of the child in the image—an infant on a ventilator. The woman – I’m assuming she’s a nurse because of the scrubs, but also because of the tender way she is cupping the top of the infant’s head—looks nothing like any of the nurses who spent so many months by our side all those years ago. Yet, suddenly, I can see their faces and hear their voices.

I can hear it all so clearly—the hum and whoosh of the ventilator, the sounds of the automated blood pressure machinery. I can hear the sounds of the gentle crooning as they shushed and soothed sick babies. And the alarms—oh, God—the alarms. I can feel the sudden, urgent energy in the room when something went terribly wrong. And the tears and stricken silence following the unthinkable.

I don’t think about those things often—seldom consciously. Yet, I can’t help but wonder at how deeply they have been etched into my psyche. How little it takes to trigger the emotions and memories.

Nik’s finger traces over the image of controls on the ventilator. He turns his head to me as if in question, but I don’t know what he’s asking. Could he possibly remember? He was so tiny, so fragile—weighing barely more than a pound of butter. Is it even possible? I can’t help but wonder. Is his sudden, reverent fascination with this particular image on this particular day because of an offhanded remark I made to a nurse today about how little he weighed and how long he was in the hospital? Does he have those visceral flashbacks, too?

I can point to specific habits and traits he has developed as a direct result of his 209 days in the NICU—habituation they call it. The way he likes to fall asleep all scrunched into a ball with his feet and head pressing against something? That’s a vestige of all those months cocooned in a bendy bumper. The way he can sleep through almost ANY sound, but cannot sleep alone in his room. The way he constantly needs music in the background of whatever it is he is doing. But, never, before this dizzying, heart aching moment, have I ever suspected he had more than hazy awareness of his time in the hospital.

I have kept my own memories and emotions so neatly compartmentalized that I simply assumed he had no real memory of any of it. It’s been easier for me to cope with my own waves of remembrance that way. The thought that he might have powerful conscious memories of his difficult sojourn tears at my heart. If I, at nearly 50, still cannot process it all without falling apart, what must it be like for him? How does he process all that happened to his tiny body and tender spirit without the layers of cognition and understanding?

I don’t have any nice neat wrap up to this story; it’s unfolding as I write. I’m processing as I go. Apparently, so is my son.

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Doing the Write Thing

A milestone many, many years in the making. It’s still a work in progress (especially the letter k), but it’s finally happening!

My boy is so proud of himself, so happy when he writes his name. It’s his new favorite thing to do and he does it everywhere — with his fingertip on the side of the bathtub at night, on the playroom walls, tracing his name on the glass of the storm door as we wait for the bus. When he thinks I’m not listening, I can hear him softly trying to sound out the letters one by one. “Mmmmm, ihhhhhh, kuh.” (He cannot articulate the sound of many letters, including N.)

Waiting for the bus this morning:

“What does that say, sweetie? What does it spell?”
His nimble fingers fly to his device to answer — name.

He knows it is his.

“That’s right, love, it’s your name. Can you say your name?”  Knowing full well he cannot articulate the actual sounds into one fluid word, I have no expectation of a response, but he tries; he always tries.

Today, however, he voices an unexpected and enthusiastic “Guh!

Startled, I smile widely and feel the sting of tears in my eyes.  He knows he has surprised me and his face splits into an infectious grin as he claps with glee at his cleverness.

My boy is nine. I don’t expect that he will ever use his laborious manual writing for more than signing his name, but I am so incredibly proud of his efforts and his perseverance; both are –in spite of the continuing state of flux of his health and his daily challenges– such constant facets of my amazing child.

The only things more constant are the love and pride I have for him.

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Today, Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of… the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD). Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.  I hope you will add your voice in support of these efforts. Your life may not be graced by a loved one with an intellectual disability, but I am sure you know someone whose life is touched on a daily basis. The next time you hear someone using the term as a slur, please speak up. For your friends, your loved ones… for my child.

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kaleidoscope

I’ve always been fascinated by kaleidoscopes.  Turn the tube one way and brightly colored glass particles create a gorgeous, perfectly symmetrical array of brilliance.  Many, many moments with my son are like that —dazzling; the colors almost hurt my eyes they are so intense and the pattern so beautiful.  Occasionally, if we’re lucky, we actually have entire days of lustrous sparkle and dazzling displays.  Saturday was a shining example of such brilliance within my son. 

We took Nik to the local Fall Festival at the same orchard that hosts the Peach Festival every August; there was nary a meltdown in sight as we drove to “the farm.”  With a few exceptions, Nik was like all the other children there —clambering over bales of hay to reach the top of the slides, running through the corn maze, laughing and enjoying the glorious autumn sunshine.  Never mind that he wanted to eat the pumpkins; he kept signing apple as he tried to lick the orange skin.  Never mind that he had no interest in the petting zoo except to try to climb the fence.  The whole experience was a gigantic leap forward from a year ago when Nik wouldn’t even go near the hay or the slides, and kept losing his still tentative balance while standing in the “sandbox” full of soy beans and corn; he just wanted to climb in and out without actually touching the beans or corn—a major sensory aversion for him.  I think we lasted twenty minutes before we threw in the towel.

This year, Nik managed to hold his own— even in the face of our forgetting to give him his medication before we left the house.  He tolerated a return drive home, not getting out of the car (which usually sends him right over the edge) and was pleasant and sing-songy the entire trip back to “the farm.”  Niksdad gave him his medicine and that was that; there were slides to slide and hills to conquer.

To say I was proud of my boy would be an understatement.

Sometimes the gem-colored bits slip and tumble— tripping and sticking on one another.  The slightest change can create a jarring, confusing jumble with no discernable pattern, no rhyme or reason to the splintered shards.  Lately, it seems our days are becoming more and more like this imperfect kaleidoscope.  The colors are still there —we see glimpses as they tumble around, but the pieces are in constant motion, the formation constantly changing.  Just when we think we can detect a pattern the pieces shift again, leaving us no closer to the serene brilliance we’ve come to expect as the norm.

I’d like to think it’s simply the time of year or a time of growth for my son which causes such tremendous shifts in his daily patterns; I don’t think I can anymore.  His behaviors have become more extreme —both the highs and lows—as I cling to a rapidly eroding sense of any middle ground called peace.  Sleep has become an elusive specter which will not settle comfortably upon our house.  Instead, it teases with brief snatches of slumber interspersed with longer periods of wakefulness. 

Here, too, there is no discernable rhyme or reason to the patterns.  One night is filled with painful shrieks and injurious wrestling.  The next is a cascade of gentle laughter and quiet singing as the moon dances in the sky outside my window.  We are left weary, without answers to questions we’re not even certain of any more.

The daily behaviors are becoming more difficult to laugh off and dismiss as amusing antics.  The long-awaited physical milestones —running, climbing, throwing— have crossed an invisible threshold and become potentially dangerous for their perseveration and lack of control.  The funny videos I post of Nik climbing or standing on the back of the sofa are funny —for a few moments.  Then, they become evidence of hazardous behavior as Nik is determined to master every physical space in reach; he cares not whether we admonish him to stop.

Our home is, bit by bit, becoming a Spartan fortress.  Little by little, we have had to strip away nearly everything from our family room —where Nik spends much of his time when at home.  The end table and lamp long ago gave way to a wall-mounted swing-arm light.  That quickly was replaced by a swag lamp suspended from the loft above.  The pictures on the wall and the handmade wedding quilt  have recently been removed to keep them safe from Nik’s curious hands and to keep Nik safe from broken glass or having an oak quilt hanger crash down on his head as he attempted to swing from the quilt.  Furniture has been removed from the room.

Moments of brilliance amid increasingly longer, more frequent moments of jarring disharmony.  

The boy we weren’t sure would walk now runs everywhere.  Even his orthopedist recently remarked at how fast Nik is.  His exact words—as Nik took off at top speed down the hallway on Tuesday: “Holy cow, look at his acceleration! Give that kid a football!”  I live in abject fear of Nik getting away from me in a parking lot or in the street. 

The boy who, for years, wouldn’t raise his arms over his head now has amazing upper body strength; he can pull himself up and over nearly everything.  If he can get a good hand hold and something to push his feet against, Nik can climb anything.  I can no longer take him shopping unless I have help because he can climb out of the cart faster than I can get him back in.

The boy who has been aloof for years now wants to be in physical contact with people all the time.  Sitting or holding hands together is not enough.  He wants to be climbing my torso, flipping himself backward in a somersault and doing it again…and again and again.  He wants to ride on his daddy’s shoulders so he can hang upside down by his ankles as he squeals with delight.  Not once or twice but for as long as Niksdad can hold him.

The boy who was once oblivious to his surroundings now sees everything.   His compulsion to touch everything, to explore and dissect and analyze is all-consuming.  On one hand, these are all very good things — until he begins, literally, climbing over his neurologist to get his stethoscope or the reflex hammer.  The doctor, a really wonderful sport who adores Nik (thank God!), puts Nik down only to fend him off moments later —repeatedlyI do not sit idly observing; I am in the thick of it trying to keep Nik occupied sitting on the floor.  It is a fruitless endeavor; I finally end up having to hold him in my arms —like a sack of writhing potatoes over my chronically aching shoulders.  I am drenched in sweat by the time our visit is over. 

Sadly, this is not a one-time occurrence.

We once thought it was wonderful the way Nik explored his world so physically; it was a necessary part of familiarizing himself with the world he was unable to experience for so long.  Now, it has become a danger as well as a distraction; Nik is unable to sit still long enough to complete a simple puzzle or to play a short game of matching images.  He is no longer available for more than the briefest moments of learning.  Nik is a rapidly growing, strong —and incredibly smart— whirling dervish; we need to be able to harness that energy so our brilliant boy can learn.

We’re on the verge of adding yet another diagnosis to my child’s already hefty dossier — ADHD.  We’ve fought it for a long time, trying to help him with diet and activity.  However, the current situation is simply untenable— for all of us.  Reluctantly, we have begun exploring medications which might help Nik with some of his restlessness and impulse control. 

But there are challenges of side effects which, while never desirable, could actually be dangerous to Nik’s health.  We’re limited to certain medications because Nik still won’t chew and swallow more than soft foods or crackers and dry cereal; he certainly cannot swallow pills yet.  The remaining options can put him at significant risk for heart troubles because of his cardiac history; we have to get a full cardiac work-up before we can even consider certain meds. 

Then there’s the whole loss of appetite side effect which can be significant with some of the meds available to us.  That’s a huge concern to us given Nik’s feeding issues and history of failure-to-thrive.  Though he’s growing well now, Nik is still not even on the growth chart for weight in his age range.  My sinewy boy is still able to wear size 3T pants— despite the approach of his sixth birthday a mere seven weeks from now.

The final issue is Nik’s hypersensitivity to any medications which alter his central nervous system.  Seriously, the slightest changes can send him right over the edge; the highs get higher and the lows get lower —and the swings are faster than usual. It’s not a safe situation.

Still, we’re largely out of other options right now.  Even the neurontin —which significantly helps with Nik’s mystery pains —does nothing for Nik’s sleep.  Nor does the melatonin help.  Nik wakes every night now —multiple times most nights, at predictable intervals— and stays awake for a while playing or singing in his crib.  During the day, the combination of extreme hyperactivity and utter lack of impulse control makes it nearly impossible for me to leave Nik alone for more than very short periods of time any more.  The added layer of significantly disturbed sleep compounds our respective inabilities to cope with the stress.

It feels like a deal with the devil; we’re damned if we do, we’re damned if we don’t.  Yet, the cost of doing nothing is too great any more. 

The kaleidoscope turns and the fragments tumble again.  What will we see as the shards settle into place— chaos and disarray or brilliance and beauty?  One masks the other at any given moment.

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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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Apparently, I am not the only one in my family with issues of  letting go.  (I feel compelled to add, for the sake of clarity, that my issues are not akin to Nik’s!)

We saw Nik’s beloved Doctor Mary this afternoon.  It’s true, she is beloved; she is the only doctor Nik will ever fully —and joyfully— cooperate with no matter how awful he may be feeling.  He adores her and makes her laugh; it’s a win-win social skills situation all the way around. 

But I digress.

The results from the lab cultures will not be ready for a few more days; apparently the specific cultures Doctor Mary requested can take up to five days.  But we don’t think Nik has an infection, really; the severity of symptoms ebbs and flows —from severe to nearly nonexistent— in the course of any given day.  There is, thus far, always a slight lull after Nik’s had a couple of really awful days full of explosive diarrhea.  (What?? TMI?  Try living with him for a while!)

The abdominal x-ray —which I must say Nik was an absolute champ for— showed no structural concerns but did show a significant amount of stool in the large bowel.  At first blush, it appears that he is developing a bad case of  constipation —bordering on a partial obstruction.

I won’t go into graphic detail about what leads Doctor Mary to this conclusion.  Imagine your kitchen drain being partially clogged; it still works, just a little slower.  When it gets really bad, you have to, erm, help it along.  Same thing with Nik.  Of course, this doesn’t address the underlying cause of the situation; one thing at a time.

So, if I disappear over the next couple of days, though I hope not to, you’ll know it’s simply because things have gotten —as the good doctor put it— “worse before getting better.”  If that doesn’t do the trick, we’ll revisit the issue with Doctor Mary at the end of the week.  She may want another x-ray to see just how bad things look.

Fingers crossed that it all, ahem, comes out okay.

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Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question marks —“Do we need to save this?  What if we need this?” 

 

While my husband has been in school and working every weekend our time together has been limited.  Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.

 

Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week.  He was home and wasn’t buried in the books so we had a chance to finally tackle the loft.  It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete.  The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.

 

I can finally imagine what it will look like when we have completed the project.  More to the point, I can already feel the sense of ease which permeates the space.  Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable.  We both wonder why it took us so long to make this space —where we spend so much waking time— our own.  I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.

 

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Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him.  He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief.  He clasps his long fingered hands together over and over asking us to help him, to ease his pain.  To make it stop.  We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.

 

This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me.  It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death.  The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain.  I cannot; it would be too cruel.

 

My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears.  I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.

 

The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too.  Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”

 

I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn.  The history is too strong and the memories run too deep. 

 

 

I want to shed the burden but I seem unable to.  There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf.  I fear the complacency.

 

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I sit at my desk, still wedged into the corner but less crowded now.  The room is the same yet it feels different.  Attitude?  Belief?  Perception?  I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports.  “What if I need this?  What if Nik needs me to have this?”

 

I examine the pages, searching for clues —answers someone may have overlooked.  On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived.  Another day of getting stronger, healthier —closer to coming home.

 

I realize the answers I seek are not to be found on those pages.  Still, I am unable to let go.

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Thank you to all of you who weighed in on my last post about our dilemma. When I wrote that post, we had not yet hit the proverbial wall; I didn’t know the behaviors would get even worse. The first night of the medication —only two doses given at full strength —left Nik in a lethargic zombie-like state the next day; the second night —doses of only half strength— accomplished the aim of uninterrupted sleep and a subsiding of the allergy symptoms but left Nik in an even worse state of hypersensitivity and extreme agitation.

We opted to forgo the medication and try to mitigate any allergic response as much as possible using some homeopathic remedies to relieve the symptoms. Now, say what you will about homeopathy —we are all entitled to our opinions —but I have personally experienced times that it works both for me and for Nik. I certainly don’t believe homeopathy —or anything else for that matter— will “cure” my son’s autism (or anything else). What I have seen, though, is that it can ameliorate some specific symptoms of physiological responses and make things a bit better —more manageable, if you will. Such has been the case with the homeopathic antihistamine we’ve used. It’s not perfect and it doesn’t solve the problem by any stretch —Nik’s still showing signs of allergy or extreme sensitivity— but it makes Nik more comfortable and less inclined to claw at his head. And that’s all good.

Anyway, we decided Nik in the aftermath of the Atarax was too close to our experience of Nik in the weaning stages with Lamictal. (You may recall that was an ugly time for us.) Nik continues to show us that he does not handle certain types of medications well at all. No amount of titration or even minimal use will work. He has had adverse reactions to four different seizure meds, paradoxical responses to another anti anxiety med plus Benadryl, and now this. At some point, we have to respect the messages he’s giving us. That point is now.

Last night, Friday, was our second night without the Atarax. Nik slept okay —not as long as I’d have liked but soundly none the less. This morning, the light is back in his eyes and the music in his voice. As I write in the loft, I can hear Nik playing happily in the family room below; he’s actively engaging with his electronic toys, singing along in time with the music and “talking” back when they make the letter sounds. “Huh” he says when the alphabet train says “This is the letter H.” Instant recall where two days ago there was confusion and extreme frustration at his inability to retrieve the information in his brain.

I witnessed the same thing yesterday in his OT session; he couldn’t recall simple things that he’s long ago mastered —this one was matching colors in a sorting activity —and he got so frustrated that he just fell apart. Yet, today he’s able to respond to a disembodied voice from his toy asking him “Where is the letter P?” He recognizes that he has to wait a moment before pressing the right button and he’s actively looking at the letters to find the right one. He even says “guh” for “good” when he knows he’s pressed the right button. He is aware in ways he hasn’t been for a few days.

As for me, well, I suppose I’ll just learn to adjust and sleep less. Meanwhile, the payoff of seeing my son back to his normal rascally self is enough to keep me going. Our quest for information and answers continues.

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