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…