Season of change

Nik’s IEP is next week. I have been in constant contact with his teacher (who gets him, thank God; she really gets him), writing goals and summaries, researching and ranting to friends about “stupid OT’s” who think my kid needs a handwriting goal… again; Nik’s teacher will set her straight.

A sample of Nik’s ability to trace his own name after 8+ years of occupational therapy. There are reasons I keep pushing for assistive technology, folks!

As far as IEP’s go, I think this one shouldn’t be too bad; Nik’s got a really great team working with him this year. They get him; they have seen the funny, smart, affectionate child I see. They know him well enough to recognize when he is having an off day which is not representative of his potential.

Still, I’m not going to lie; the anxiety is really running deep over this one. We are making big changes, big requests and, possibly, even adding some new letters to the already overflowing alphabet-soup of diagnoses and classifications which are a significant part of Nik’s educational record. We’re losing some services but gaining others…for now. We’re going to be asking for a minimum two-hundred percent increase in one of his services; I expect a lot of push-back on that (thus the reading and research). Over all, though? I’m hoping for good things and easy resolutions.  And yet…

He’s nine. NINE. The gaps between my child and his peers are growing so much wider and the fears I have for my his future are taking root ever deeper in my spirit. The emotions are hard to push down.

I see-saw between hope and despair, manic laughter and tears.

My fingernails have all been cut off to keep me from biting them to the quick.

I may or may not have indulged in some emotional eating lately.

It feels like so much is at stake in this particular meeting. This particular year. It feels pivotal and overwhelmingly, intensely…huge.

It’s too much. And I am foundering.

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A Month of Gratitude – Day Six: Limitations

Sorry to disappoint, my friends. I don’t have a pithy, meaningful or otherwise significant post to share tonight. The demands of the day and the need to prepare for an early morning appointment with Nik have me recognizing my limitations and acknowledging that I need to take care of myself; Nik and I will be on the road at sunrise and, though he’s grown and changed in so many amazing ways, his needs still require a great deal of logistical planning.

I am grateful for my ability to recognize and honor my limits. Tonight, I will don my Oxygen Mask and bid you sweet dreams until tomorrow.

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A month of Gratitide – Day Three: Peace

Today, I give thanks for peace.

Not peace in the sense of wars and cease fires, disarmament or global resolution – though that would be nice. Nor am I talking about that deep and abiding sense of inner peace – that all-encompassing knowledge that all is as it should be in one’s world and the path forward can be visualized if not actually seen. My world, my daily life, is far from that predictable!

The peace of which I speak is simpler, more fleeting.

It’s the lingering minutes of quiet after my son has fallen asleep on the sofa while my husband is sleeping before he goes to work. That rare window when the cats are asleep and the only sound I hear in the house is the gentle trickle of water from their fountain. Or the subtle creaks and groans of the windows as the wind picks up outside.

The peace of knowing I can drink a cup of tea while it’s still hot. Or go to the bathroom without a visit from my son – or one of the cats.

I give thanks for the peace which settles into my body– no matter for how short a time – as it relaxes, relieved of its state of constant vigil. A reprieve from the coiled tension required to spring into action to keep my son out of harm’s way due to his utter lack of a sense of danger. Peace even to my ears – respite from the perseverative demands of “go car mama” or “pretend doctor.” The constant refrains of  songs from Mary Poppins, She’ll be Coming Around the Mountain, or the days of the week songs in all their various renditions available on YouTube.

Peace.

Those rare moments of quiet, when the tension drains from my body and my mind slows from its constant whirl. Those infrequent times when I can put aside the constant worries about my son’s fragile health, about his uncertain future. About our finances and our future plans. When I can shut out the world for just long enough to really catch my breath.

In those rare moments, I find I can breathe more fully, more consciously.

Deep breaths in… Slow, cleansing breaths out.

In so doing, I gently refill that well within me which, far too often, is on the verge of running dry.

In the quiet, I breathe in peace.

Blessed, blessed peace.

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It’s 9:01 AM and I need a drink

The routine is the same each day. Nik precedes me to the front door by mere steps and waits while I pick up his backpack.  He carries his speech device, which weighs just under ten percent of his entire body weight, so I take the backpack.  He prances with unfettered joy as he waits for me to unlock the door; he loves going to school. I allow him to walk to the car ahead of me where he waits by the passenger door in the back.  It’s a routine so deeply ingrained that we don’t even think about it.

Chalk it up to the sensory aftermath of Irene, or the seizure medications which are playing tricks with his brain and body. Blame it on the moon and stars, the planetary alignment. For whatever reason, our routine is off today. Nik darts past me as I grab his device off the dining room table. He is eager to go to school; the new year has started and he already adores his teacher. Today is gym day —his favorite activity. Not surprising for my boy of perpetual motion and boundless energy.

8:09 AM:
I reach the door at the same time he does.  As I reach for my keys, I realize I don’t have the backpack. In the instant it takes to turn and pick it up, the door is opened and Nik darts out.  “Wait for Mama, Baby; I’ve got to lock the door. I’ll be right there; go stand by the car.”  The same script we run every single day. I’m moving as fast as I can so I can help Nik get into his car seat; if I dawdle, he will climb into the front seat and start playing with the radio and the gear shift.  Not such a big deal, but today we are running a smidge late and I don’t relish the added hassle.

Quickly, I pull the door closed behind me and look to where Nik is standing by the back door of the car.  The emptiness of the space takes a moment to sink in.  I scan the car to see if he’s already inside; it’s empty and the doors are still closed. “Nikolas? Where are you, baby?” I call in a voice I think I recognize; it’ is slightly shriller than normal. I turn and scan down the street; Nik knows his Nanny and Granddaddy live just six doors down.

There is no sign of him.

8:10 AM:
Instantaneously, I am engulfed —mind, body and soul— by a blinding, breath-stealing panic.  I begin to scream in earnest, “NIKOLAS! NIKOLAS ERIK!! Where are you, Baby?”

Silence.

I throw everything I am holding on the ground.  The contents of my purse tumble out; the water bottle from Nik’s backpack goes rolling to the end of the driveway. I don’t spare a thought for the speech device as it crashes to the ground; it costs more than my car is worth, but I don’t think twice.

Gasping, screaming, my heart racing and my stomach clenching.  “NIKOLAS!!! Baby, come here, baby!” NIKOLAS!!!!!”

The neighbors are not home so I know he didn’t run to their house; they would know to bring him to me anyway. In a sickening instant, I think about the hurricane-swollen creek behind our house.  Nik is obsessed with water and he is fast enough to have gotten around the quad of townhouses we live in.  Sobbing hysterically, I am still screaming his name as I take off running to the side of the house.  My throat is tight and raw and I can’t see.

A loud crash behind me captures my attention, stopping me in my tracks. I turn to see that our garage door is open about a foot.  Oh my God, the motorcycle! I race toward the garage, screaming his name.  I don’t expect him to answer, but I cannot stop myself just the same.  I hit my knees on the black top and look under the door.

I can’t see him.

The sudden flood of possible permutations of lethal dangers in the garage fills my lungs, displacing all air. I cannot breathe.  Time simultaneously stands still —allowing all those possibilities to cross my mind—and accelerates; each moment he is missing feels like it’s been ten minutes long.

Jumping to my feet, I punch in the code for the door opener. My hands are shaking so badly I can’t get it right.  I am too large to squeeze under the small opening under the door. I fly to my car and open the door just enough to reach the remote opener on the visor.  As I hit the button, I pray Nik is not near the door when it starts moving.  He is not.

As the door lifts enough for me to get under, my eyes take a moment to adjust to the light. I can see my husband’s motorcycle still standing where it should be.  My son is not pinned beneath it as I feared. I look toward the plethora of lethal garden chemicals and dangerously sharp implements he sees his daddy use outside on a regular basis. He is nowhere near them, nowhere in sight.

Panic and fear are rising with the bile in my throat.

The water! If he’s gone there I may be too late.  As I turn to leave the garage, I bargain with God to allow my too-large body to move quickly enough to keep my baby safe.  If I run through the house I might reach the back yard before Nik can get into serious danger.

Another crash, not as loud as the first, draws my attention further back inside the garage—toward the fire door leading into the house. It is locked with two deadbolts so I know he cannot get into the house. I hear a giggle from around a corner. I look beyond the metal storage shelving, afraid of what I might find.

There, on the concrete, sits my boy.

Oblivious to both the dangers around him and my abject panic, he is happily playing with one of the few things in the garage which can do him no serious harm if he were able to get it open…a can of cooking spray.  I suppose he likes the feel of the cool can in his hands, the sound of the contents shaking inside. The bright red cap. Thankfully, he doesn’t have the grip strength to remove the cap—the color of which must be what caught his attention.

I didn’t think it was possible to shake any more than I am or to lose my already-absent ability to breathe; it is unavoidable.  I hit my knees and scoop him into my arms, sobbing and kissing his little face, his soft brown hair.  “Baby, don’t ever scare Mama like that again!”

I know he doesn’t fully understand; to him, it was just an adventure.  He was going about his routine just like normal when —Ooh! Shiny!— there it was, a space just begging him to slip through into the darkness to explore.

8:17 AM:
I carry him to the car and strap him into his seat, thankful for the familiarity of the routine which doesn’t require thought or sight; I have neither as I am now sobbing and gasping.  Shaking uncontrollably from the adrenaline surging through my body.  I collapse against the car door as I close it, closing him safely inside.  Minutes later, I gather the items strewn about the driveway and we head to school.

As I drive, on autopilot, Nik chatters happily in the back seat about “gym, ABC, Ms. Margaret, school.”

8:30 AM:
I hand Nik off to his para and tell her simply that we are late because Nik ran off this morning. I give Nik extra hugs and kisses and send him off.

8:32 AM:
I sit in my car in the school parking lot and breakdown.

It could have been worse. So.Much.Worse. The knowledge of which has changed my world.  Irrevocably.

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ill wind blowing

the change comes
fierce and sudden
a raging tornado
in the midst of a placid night
we are sucked into its vortex

the unholy violence of
the blows he rains upon his body
head
face
eyes
shake me to my core

barely small enough
for me to contain
to minimize the damage
what will I do
when he is older
bigger
and I cannot keep him safe

minutes pass
i sense rather than see
the softening of his cheek
the easing of his brow
as suddenly as it came
the storm has passed
for now

he settles
passes out
not so much asleep
as utterly spent
arms flexed
and slightly aloft
as if to grasp
or fend off
an unseen
or unwanted
touch

i weep
shaking silently at his bedside
trying to pick up the pieces
of my battered
shattered spirit
piecing myself together
so the seams don’t show
a quiet prayer
“I love you, bear”
whispered in the shadows

my hand trembles on the doorknob
as I slip out
into the brightly lit hallway
i make my way
reluctantly
downstairs to eat dinner
knowing
I will taste
only bile
and ash
as i wait
for the storm’s return

 

Image courtesy of Rhandell Mitchell (http://rhandellmitchell.com)

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Obstruction

I don’t know if I should be comforted or frustrated by the knowledge that my instincts were right about the ENT.  As Murphy’s Law would have it, Nik’s ear looked great and his tonsils seemed fine when the doctor got a good look.  Well, hell, I’m not a doctor but I’m pretty sure that even I know that a week on heavy-hitting antibiotics might have some slight ameliorating effects.

The bottom line is that the doctor doesn’t think the tonsils are the problem and doesn’t want to remove them; he said he thinks it won’t give us the results we are hoping for and may make Nik’s oral motor issues worse.  Now, here’s where the good doctor and I part company because I’m pretty sure he’s looking at this strictly from his little ENT-corner-of-the-world view while I am looking at the big picture.

To whit:  Nik has a significant history of both cardiac and pulmonary disease or insult.  He was a history of Failure to Thrive (FTT) and is still in the third percentile for both height and weight for his age with a body mass index of less than fifty percent.  This child who used to sleep ten to thirteen hours per night without incident has not slept well in three years; the average amount of sleep Nik now gets is eight hours total —broken into three, sometimes four, segments.  His longest stretch of sleep these days is about three hours.

My once placid and even-tempered child is now a whirling dervish with a recent diagnosis of ADHD.  I’m not sure I buy that, really.  Not as long as there may be any underlying pathology which may be treatable.  And the long-term cost of doing nothing but medicating it and hoping it resolves itself is too great.  The threat to Nik’s overall health and development is not insignificant; the toll on our family as a unit is beginning to show.

I’ve already got calls in to our fabulous pediatrician; I know I can count on her to go to bat for us if we need to be referred outside our state for a second opinion.  Yes, one drawback to living in a small state is that all the pediatric otolaryngologists practice in the same facility.  Apparently, they also all share one opinion among themselves depending on who’s on the schedule.  But I digress.

Nik’s insurance demands that we exhaust all possibilities before they will deign to authorize an out-of-area office visit.  That means our next step is requesting a sleep study.  Call me jaded but I like to think of it as a sleepless study; let’s face it, there’s no way anyone can sleep “normally” when they’re in a hospital and wired to all sorts of machines —especially gadget boy Nik.  But it’s one of the hoops we have to jump through before we can make any real progress.

Stay tuned…

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In which I cross my fingers

This has been an unbelievable week. 

My brother-in-law’s younger brother passed away on Wednesday morning.  Then, his sister died on Thursday evening.  It’s not my story to tell but it has been, as anyone might imagine (and forgive my profanity), a bitch of a week.

Toss into the mix the fact that Nik is not ony not sleeping through the night, but he’s getting more and more agitated each night that he is unable to sleep.  The poor kiddo wants to sleep in the worst way.  Last night, as he fought to go back to sleep for nearly four hours, he alternated between lying in his crib, sobbing and punching himself in the head, and sitting up —also sobbing— and banging his head against the crib.  He would calm himself down and lay down to go to sleep only to be sobbing twenty minutes later.  It’s been heart-wrenching —and beyond exhausting.

Those of you who’ve followed our story for some time already know that we use melatonin, we’ve tried a variety of medications, relaxation techniques, etcetera. Nothing works.  The bigger he gets the worse it gets.  Now, the patterns of disrupted sleep even show up on his EEG’s.  Sleep Maintenance Insomnia is the official diagnosis.  I kid you not; there is such a medical diagnosis and it’s actually fairly well-studied, documented and classified.  And it’s not a good thing for an already undersized, developmentally delayed child with growth issues. 

The human body does most of its growth and repair during sleep; children Nik’s age should be getting an average of ten hours uninterrupted sleep per night.  On a good night, Nik will get about three and a half hours in before he wakes.  Some nights he’s only awake for a short while —twenty to forty minutes.  Others, like the last three nights in a row, he is awake for just as long as he has been asleep.

Tonight, we began a trial of clonidine at bedtime.  We’ve been reluctant to use it because of Nik’s history of rebounds and adverse or paradoxical responses to nearly all medications which alter the balance of his central nervous system.  Desperate times call for desperate measures.  I am worried that we’ll see a lot of grogginess tomorrow —and probably some significant behavioral challenges.  But, you know, I think I can handle those if I’ve actually gotten a good night’s sleep.

Fingers and toes are crossed!

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Because I said I would

Wow, this getting back into the habit of writing is hard.  It doesn’t help that I am the world’s worst procrastinator. (Um, does that actually make me the best?)  It is so much easier for me to flit back and forth on Twitter and Facebook.  Little snippets of conversation between Nik’s multitude of appointments, meals, snack, school work and play time.  Of course, that just feeds into the whole short-term memory deficit…

So, I have nothing really moving or important to share now.  Life is looking moderately steady —including the consistent lack of sleep each night.  Nik keeps waking at about the same time and then waking/sleeping in these three-hour cycles.  Niksdad and I have all kids of questions and half-theories about what could be causing the sleep disturbances.  It may or may not be related to Nik’s recent (as in, this winter) development of Reynaud’s Syndrome.  At least, that’s what we’re calling it for now; he has all the classic symptoms but hasn’t been diagnosed yet. That appointment is at the end of this month.

Meanwhile, knock on wood, Nik has been moderately healthy for the past month.  An occasional need for Mucinex here and there but no real illness. That in itself is progress. He has had these weird episodes of extremely swollen tonsils without infection.  We’re talking so swollen that you can actually see the tonsils touching the uvula. It does explain the intermittent food refusals we’ve seen recently, too.  I mean, who wants to eat with all that stuff blocking your throat, right?

Tomorrow is another EEG for Nik.  I’m not sure if I want the neurologist to find evidence of seizures or not.  On one hand, it would explain some of the odd tics, facial expressions and behaviors we’ve seen in the past couple of months.  On the other hand, it would mean that Nik’s seizures are back.  Wow. That was a hard sentence to reread “…Nik’s seizures are back.” Yup, I think I hope the EEG is negative after all.

That’s the funny thing about this parenting of a child with so many unknown and overlapping medical and developmental issues, you never know which team to root for , so to speak.  Does having a diagnosis mean the problem goes away or is at least treatable? Not necessarily.  But, is the not knowing less scary than the big, scary possible diagnosis?  It’s a damned-if-you-do-damned-if-you-don’t kind of existence sometimes.

So, I try hard not to focus on those things until the last possible minute —like on the way to the doctor’s appointment or the lab.  (See, the procrastination can be a sanity saving measure sometimes!).  But the truth is, the worry is always there.  And it’s not just about the medical stuff.  School, communication, and so many arenas.  It gets paralyzing.  Overwhelming sometimes —especially when it all snowballs.  I just shut down.  Maybe that’s why I stopped writing for so long, too?  It’s so much easier to comment on someone else’s situation than it is to face my fears and anxieties.

There are a lot of those lately.  So many I can’t even articulate them yet.  But I will.  Because I said I would.

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Finding a new normal

If you’ve been reading my blog for a while or following me on Twitter, you know that things have not been exactly smooth and easy sailing of late.  Nik’s hyperactivity has gone beyond mere “making up for lost time” and has, in fact, morphed into flat-out dangerous at times and more than a bit exhausting at others.  Nik now requires constant supervision; that makes for some very stressful days while my husband is at work. Sleep has been in short supply which means that fraying tempers and impatience have been in greater evidence lately.

To say many things have fallen to the wayside or suffered as a result would be an understatement.  There are days I can’t turn my back on Nik long enough to put together even the simplest of dinners— not even in my beloved crock pot!  Showers are now taken at night before I got to bed. Laundry and cleaning get done in fits and starts; thank goodness for our front loading washer with a time-delay setting and a husband who’s not afraid of laundry or a vacuum cleaner!

We’re in the process of stripping down what was once our Family Room —the hub of our home where we used to hang out and watch TV, read, drink coffee after putting Nik to bed— to create a sensory-friendly play space for Nik.  Literally, the only things which remain in the room right now are a sofa, our locked TV cabinet, and a handful of Nik’s toys.  Long gone are the pictures and wall hangings, the decorative items on the mantel.  Hell, even the mantel is gone in an effort to keep Nik from climbing the walls. 

We begin each day by removing all the pillows and sofa cushions —Nik has figured out how to stack them to use as a platform from which he climbs on top of the TV cabinet (which is already five feet tall).  If he’s able to get on top of the cabinet, Nik has been known to try to swing from the track lights above it —as recently as Tuesday afternoon, in fact.  We have had to take away many toys which Nik can stack or stand on, and we now have to actually tether the double-height gate with removable zip ties.  If we don’t use the zip ties, Nik is able to squeeze himself up between the two gates to climb over into the kitchen.

What, you thought I was kidding, right?

Imagine my great surprise —and terror— to turn just in time to see my son reaching for my full coffee cup sitting next to a sharp knife on the kitchen counter early one morning.  Fortunately, the coffee was cold and he didn’t see the knife.  My daily existence with Nik has become fraught with anxiety and worst-case-scenario imaginings simply to try to stay a step ahead of him.  Some days it works and others, well, we end up bathed in cold, sticky coffee.

This was one of those "No one will believe me" moments. Sorry for the poor quality.

Even when the gates are tethered together, Nik has figured out how to climb the full height and can now reach the alarm panel which is nearly six feet from the floor.  The technician is coming next week to move it to a different room —after my husband and my father fish new telephone lines through to another location.  Ditto for the television cable; it’s getting moved this weekend so we can take the TV and cabinet out of the room.

I joke about “Baby Gitmo” and the fact that we have to duct tape Nik into his pull-ups, but each day that I have to close my son behind two gates and a series of zip ties, my heart breaks just a little bit more.  No matter how you slice it, it feels crappy.  We’ve gotten a diagnosis of ADHD and have been slowly coming around to the idea that Nik may need medication to help him.  Our dilemma, and it really is a dilemma not just an emotional issue, is that Nik’s system hates —H.A.T.E.S.— any medications which even slightly alter the delicate balance of his central nervous system.  You might recall the fun we went through when he was on seizure medications —the whole Lamictal tapering nightmare?

Or first foray into ADHD medications was every bit as bad.  We tried Focalin XR (extended release) for a few days before we knew it was a bad choice.  The rebound effects actually kicked in after just a few hours and the transitions from peak to trough to peak again were beyond hellish.  By the second day, poor Nik’s system was so overwhelmed and hyper-focused that his usual “strong interests” (ok, fine, perseverations) became true obsessions.  Normally, Nik is able to put one of his beloved letters (fridge phonics —we’re on our third set!) down to get into his pajamas or go eat a snack.  With the Focalin, all of a sudden not only could he not simply put them down he would scream and cry and hit his head if we even asked him to or tried to take them from him.   Even beloved outings to the park with Daddy became agonizing for everyone.  Nik would begin flailing and crying, kicking and beating himself for no discernable reason.  The bruises were so bad (just like the Lamictal situation!), we were afraid to take Nik out in public for a few days in case someone called the police about suspected child abuse. 

Despite the fact that stimulant medications usually cause loss of appetite, Nik’s appetite at meal times was voracious; he couldn’t slow down to eat in his normal fashion.  It was like watching a junkie scarfing down his post-high binge.  Nik’s sleep —already not the best —became even more restless and the wakeful stretches in the middle of the night became longer.

Don’t get me wrong, there were a few good hours early in the day when Nik was calm and easily able to focus on tasks and therapies and such.  But by day three? We spent hours just sitting together on the floor.  Nik would come to me in tears and push my feet apart so he could settle between my thighs.  He would reach out and hold my hands and simply swing them.  Usually, this is his sign that he wants me to sing; not this time.  When I tried to sing, he would shake his head violently and moan “Ng, ng, ng” (“No, no, no!”).  If I tried to talk quietly to him he would do the same thing.  It was as if the world was just too much for him to even bear and all he wanted was for me to anchor him.  If I so much as tried to get up to go to the bathroom the wails and self-injurious behaviors would begin.

I tweeted one day that I felt more stressed and anxious than I had in all of Nik’s 209 days in the NICU; I don’t think I exaggerated.  I don’t think I’ve cried so many tears or felt so helpless in a very, very long time.  By Day Four, I called the doctor to tell him we were stopping the medication; unless we’re talking life-saving measures, I don’t believe the treatment should ever be worse than the ailment.  This was far, far worse.

Meanwhile, because my husband has a long history with it, and I’ve actually experienced first-hand some of the benefits —in some situations, we decided to try a homeopathic version of a stimulant.  We figured at best it might help; worst-case scenario it wouldn’t do a damn thing.  It’s helped some.  I certainly won’t say it’s been the panacea we seek but it’s made some of the intervening days far more livable than they had been.  We’re also paying very close attention to Nik’s meal schedule; we’ve noticed an increase in the sensory-seeking and agitated behaviors roughly 60 minutes prior to a scheduled meal and a calming effect after he’s eaten.

It’s a delicate balancing act and it is very far from perfect —or sustainable.    Nik’s energy levels are off the scale at certain times of day and his sensory seeking behaviors are extreme.  His demands on my attention are draining.  We are looking into other medications to try but are, understandably, reluctant to dive in too quickly.  Still, our family and home are in turmoil as we ride out this stretch in search of answers and solutions. 

We’re confronting old pictures and new realities, figuring out what needs to give, what needs to change, or what we simply need to let go with grace.  I won’t lie, it’s a difficult and painful process; it feels similar to what we went through in the months after Nik’s extremely premature birth and again after each of his major surgeries.  I don’t think there’s a real end point to it, just a journey toward acceptance.  For tonight though, it feels a bit calmer than it has for a while.  (Let’s hope it lasts!)

In spite of what it may sound like from this post, there also has been a lot of really wonderful stuff happening.  Not the least of which was Nik’s sixth birthday yesterday.  We chose not to make a really big deal about it this year but I can assure you it was a pretty good day.  I have another post brewing about that…

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A new mantra

When we let go of hope, fear wins. 

I’m holding on tight; sometimes it feels like it’s a close race.

That’s all.

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