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Archive for the ‘developmental disabilities’ Category

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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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

20090801_Peach Festival 2

After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

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The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

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Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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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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Yesterday was an intense day. Too many appointments, the prospect of lots of lab work for Nik, and the question mark about whether or not he did, in fact, have a rotavirus. You know, just another ordinary day in our lives.

We had a great appointment with a new doctor, an allergist, to help us make some headway into figuring out the causes of Nik’s ongoing pains and recent skin rashes. We left feeling really good —despite a long list of allergens to be tested. The doctor was personable and Nik seemed to take to him. Always a bonus.

The day took a nosedive from there.

The appointment with the pediatrician, to discuss Nik’s recent apparent illness and whether to culture for a rotavirus, ended up not happening. The nurse that had scheduled the appointment had not confirmed it in the computer. When we arrived, we were told that the second doctor in the office had a family emergency; that left Nik’s doctor, Doctor Mary, holding the bag for all the appointments for the day. Since Nik seemed to be so much better than he had been even twenty four hours prior, we opted not to wait in the hopes she could see us.

We headed over to the lab to get the blood drawn for Nik’s battery of tests. After a lengthy wait, we were greeted by a seemingly disorganized lab tech. As soon as she realized the tests were for Nik, she balked. Whether it was because it was so close to the end of her day and she didn’t’ feel like dealing with a screaming child or whether it was simply because she felt like it, she told me she couldn’t do the tests because it would require more blood than she could take from a child at one time. I’ve since discovered that wasn’t true but, whatever.

So, a lengthy day spent traveling up and down the middle portion of our state, bouncing from appointment to appointment —it made us tired and cranky. By the time we got home, we decided to go out to dinner. As luck would have it, both Nik and I had reactions to some food. Neither was too bad, but it was enough to make us both uncomfortable.

I woke this morning feeling pretty tired and crabby; a state I must confess lingered until about lunchtime. I’ve been sitting at my computer, willing myself to find words to write —and coming up dry. I’ve also been listening to my son singing and playing happily in the loft. For some reason, it put me in mind of this post from Kristen. I realized I could choose to be angry and resentful about all the energy expended yesterday —seemingly for naught, or I could choose to find something good to hold onto.  I chose the latter —in the form of a cookie.

Yes, a cookie. And french fries, too.

Since we’ve been limiting Nik’s exposure to potential allergy-inducing foods, the allergist warned us that it might actually skew the testing. He actually suggested that we feed Nik some of the foods we’ve come to suspect —especially wheat —in order to trigger an immune response. So, with that in mind —and thinking we were getting blood drawn in the afternoon —I bought Nik a giant chocolate chip cookie. Okay, let’s be honest; it was as much for me as it was for him.  But we shared that cookie in the Starbuck’s parking lot like it was manna from heaven.

It was Nik’s first-ever chocolate chip cookie. Yeah, okay; big deal, right? Right. The cookie was fairly chewy and soft so I was able to mash up bits and pieces and slip them into Nik’s mouth. Normally, he would either gag or reach in to remove anything larger than a single crumb, but this cookie was sweet and gooey and melted quickly. And he adored it!  By the time we were through, Nik had consumed nearly a quarter of the cookie; much of that he even placed in his own mouth —another first —instead of licking it off of my fingers!

While we’ve been trying to mitigate all these weird reactions to foods, we’ve had to severely limit Nik’s oral intake; it’s just so challenging to find things he will eat that are the right consistency and texture that are not potential allergens. We’ve been more than a little concerned that he might regress in his desire or ability to eat by mouth.  So, after the allergist told us to “stimulate his system,” we decided to really go for it.

When we went out to dinner last night, we let Nik have some of a buttered roll, a lick of my patty melt —he even tolerated a very small crumble of beef on a fork without gagging—and, of course, french fries. Nik’s favorite thing to do with fries is to dip them in either Daddy’s salad dressing (usually honey mustard) or in ketchup.  His favorite thing to do last night? Show off his ever lengthening reach and lightning quick food-snatching skills. At one point, I wasn’t fast enough to stop him; Nik helped himself to a fistful of fries off the plate.  The boy’s hands are definitely getting bigger, too!

Nik did have a bit of a reaction to all those foods and was a cranky, uncomfortable boy by the time we got home —clawing at his ear, pulling his hair; we gave him a quarter dose of Atarax at bed time and another half dose five hours later. He slept through the night and has had relatively few side effects today. The allergist gave us a prescription for Allegra to see if that will help with the symptoms without causing the neurological side effects. We will start that after the blood draw on Monday.

Meanwhile, we’ll be sharing cookies —with our glasses half full.

cookie_mouse

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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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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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I’m trying hard lately to see the glass half full instead of half empty. But when my tank of sleep is running on fumes, it gets difficult to see past the haze and fog of sleeplessness and worry. In spite of getting some decent sleep last night —courtesy of a new prescription we tried with Nik which knocked him on his little hiney —I still feel exhausted and headachy today. I want a snow day off —a holiday from worry and constant watchfulness —just one day would be fine.

I’ve procrastinated too long to give the entire back story. Suffice to say, Nik is starting to show signs of developing a significant food allergy to legumes. You know — peanuts, green beans, lentils, peas, chick peas (garbanzos), guar, soy —lots of healthy sources of fiber and protein for a little guy who doesn’t yet actually bite and chew food. We’ve stopped giving him anything but fresh, plain, organic food so far in an effort to mitigate the rashes and gastric distress that seem to have popped up out of nowhere. Except, the odd thing is we think maybe they’ve been there all along and we didn’t know it. The clawing at an ear that’s not infected; the rubbing of his head and poking at his eyes in spite of being on medication to stop migraines. The gastric distress which causes him to wake screaming in the middle of the night every night —in spite of the fact that his reflux is well under control.

Nik’s modus operandi has always been to give us physical clues to follow. If we are too slow to pick up on them, his body always seems to know just when to kick it up a notch or two to really get our attention. At least, it sure seems that way every time it happens. We’ve gotten pretty good about paying attention and trying to decipher his messages before they reach a crisis stage. We don’t really have any choice; the one time we didn’t pick up on his cues for so long we almost lost him.

I feel like I am teetering on the razor’s edge all the time. Nik shows so many signs of being “normal and healthy” but the possibility of slipping off, of developing a major medical issue, is always just a hair’s breadth away. If I relax my guard, well…I just can’t. It’s the thing that keeps me so in tune to his every shiver and sigh —even in the twilight of sleep. Some people hear “food allergies” and think “What’s the big deal? Just don’t give him those foods.” In Nik’s case it’s not that simple right now.

This new development, if it really is an allergy —and wouldn’t it be nice to finally have a freaking answer— has provided a real conundrum. Where Nik is totally tube dependent right now, we must continue to give him formula. In an effort to help relieve some of Nik’s symptoms, we’ve recently stopped feeding him anything by mouth. But his formula contains soybean oil, and green beans, and pea protein. Oh, and guar (also a legume) in the form of the added fiber (think Benefiber. Yep, legume based.). Even with the absence of food —and now that we are hyper vigilant in watching for signs —we can see the changes in Nik immediately after he gets a tube feeding. The red ears, the runny nose, the clawing at his ear, tugging at his clothing —it all ramps up again. It’s the worst after dinner —his largest meal of the day.

Common belief holds that someone allergic to soy should be able to handle soy oil because the most of the sixteen different proteins are eliminated in the processing. Um, someone needs to explain that to Nik’s poor little body. He had a terrible reaction to one small cheez-it cracker yesterday at play group. (N.B. Nik has not exhibited any signs of allergic reactions to wheat or dairy.) The offending ingredient? Soybean oil.

The immediate reaction was small in and of itself but it tipped the balance just enough that Nik was miserable for the rest of the day —the screaming, crying, clawing at his ear, hitting himself in the head which have become so disturbingly familiar to us.

We saw the pediatrician yesterday to rule out an ear infection; we were all certain it wasn’t that but had to know before we could proceed down other avenues. We now have a referral to an allergist and a new prescription antihistamine, Atarax. Nik can’t take Benadryl because he has a paradox response; he’s up for hours and it gives him very little relief. Atarax is actually used for anti-anxiety as well and works differently than Benadryl. Where Benadryl works on peripheral histamine receptors (think skin and extremities), the Atarax binds to receptors within the GI and respiratory tracts —working more from the inside out than the outside in. Of course, that also means it has a bit stronger effect on the whole nervous system.

We gave Nik a dose just before dinner. I have to say, it did do wonders to keep the allergic response at bay. But poor Nik conked out at the dinner table and had to be poured into his pajamas and bed! He woke, briefly, about six and a half hours later —but he woke happy and pain-free! We gave him another dose —and a quiet toy to play with —and another half hour later he was out cold for the rest of the night. The drawback is that it knocks him out cold and has some lingering systemic effects. Today, he is off-balance and very subdued. He feels funny and knows it; he’s been very clingy and easily upset. Not a good long-term solution; we fought too hard to get him off of medications that affect him this way to go back. Oh, and let’s not forget the potential effects of central nervous system depressants on respiration; not a good fit for a child with a chronic lung disease.

So, here we sit, betwixt and between. We have theories but not enough evidence, some evidence that doesn’t fit, and a little boy who keeps trying to tell us what he needs but cannot make himself understood.

I think I understand how he feels.

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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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