You are currently browsing the category archive for the ‘sensory setbacks’ category.

:this post was started on Saturday, December 26th:

So groaned my husband late last night early this morning.

Christmas was great – both sides of our family significantly downsized the presents aspect, something I’ve craved for years, everyone got along despite the lack of sleep afforded by Christmas Eve, and the juggling between my family and Seth’s was a piece of cake this year – no guilt-inspired tug of war.

And yet, at about 11:30 I fell apart and sobbed on my husband’s lap in front of my in-laws for a good ten minutes.  Exhausted.

****

We sing a song in the children’s programs at church:

The wise man built his house upon The Rock, his house upon The Rock….

The foolish man built his house upon the sand, his house upon the sand….

****

Tuesday night we experienced one of Kelsey’s sensory superfits.  While we saw the beginnings of one over Thanksgiving, we hadn’t seen a big one in a LONG time.  Like long ago enough that sensory integration dysfunction seemed like a distant memory.

Well, Tuesday not only recalled that memory but brought it front and center.

Sleep has been an issue of late for Kelsey.  She’s had trouble with insomnia, and calming her engine enough that she can successfully relax and induce herself to sleep.  Result: chaos for an already disorganized brain.

Add to it that her school was in session Monday and Tuesday, yet really, all bets were off re: attempting  normal schedule.

Mix in one mother, caught up in the holiday hustle and bustle, also deprived of sleep because of one teething infant, whose hypervigilance at waiting for the other sensory shoe to drop has been greatly reduced, and well, I completely missed the triggers.

At bedtime, we had a battle royale about sleep and it escalated such that I had to put her in her room and hold her bedroom door shut for a prolonged period (45 minutes…have I mentioned that the child is stubborn in addition to neuro-atypical?) while she screamed and beat at the door.  It broke my heart to see her like this again.  It made me want to crawl into a hole when she proclaimed that I was the “meanest mama ever,” because when I tried to see things from her eyes I could see how she felt betrayed by me essentially locking her up, BUT I knew it was for her own good, lest I hurt her or she me.

****

It’s Christmas night.  We’ve just returned to Seth’s folks after eating with my folks, exchanging gifts and playing Wii.

It’s late.

I told Kelsey it’s time to get ready for bed and she protested.  She wasn’t one bit tired!  She wanted to read!

This is stubbornness, not a sensory issue, it seemed.

I told her she could read in the entry room but that the adults were playing a game and she didn’t need to be in the same room.

And the melt-down began.

I want to cry and scream and pitch a fit because I am bone tired after Christopher’s weeks of teething have been topped off with traveling sleep, which means none.

But I called upon some reserve somewhere within me.

After Seth had tried to reason with her, and failed, I began to see this was going sensory.  She was hysterical and repeating that she’d never be able to get to sleep, all while having that other worldly look on her face.  Nothing penetrates this look.  Just gotta take the wild wave and ride it.

Manic, she flailed at me, screamed, shook her head and just fell apart as I tried to touch her, hoping that the deep pressure could bring her back to me.  Her eyes held a look of fight or flight, terrified at what was going on inside her.  I almost broke at the helplessness of knowing her neurons were in chaos and firing excessively – lot of good knowing what does when there is no rhyme or reason to alleviating the why of the problem.

Eventually, I got her to a spare bedroom.  There I cradled my biggest baby like when she was a newborn and we rocked while she continued to huff and puff and slow her engine down.

At this point my sister-in-law entered the room, tears streaming down her face.

At first, I interpreted her tears as those of the “I can’t stand her pain, make it stop” variety and felt a twinge of defensiveness raise its ugly head.

“What…can I do…to help? I want to help her….and you.”  Her face crumpled and her tears fell faster.

It was then that I sensed that she’d gotten a glimpse of what it is for me to mother Kelsey, this bittersweet hellish rollercoaster that I ride, along with two other children who need me just as much.  Her words from our morning present-opening (we make a point of having the gift-giver tell their giftee why they love them before each gift is opened) echoed in my mind, “You’re so brave.”

I motioned her over to the bed with us.  And she just sat while I numbly and automatically did joint compressions on Kels to calm her down.  I remember at one point squeezing her hand so hard that my knuckles turned white and Kelsey whispered, “Harder, Mama.”  As I could feel her body quiet, I began to murmur to her that I knew it was beyond her control, that I wasn’t mad and that I just wanted to help her come back.  My sister-in-law asked Kels what would help her, which caused her to stiffen.  She couldn’t have known that in this state an open-ended question is just more chaos for Kelsey’s disorganized brain.  So I intervened.

At home Kelsey and I have a nightly prayer together before bed, but when traveling this nighttime rite is often tossed aside.  Routine and ritual help soothe her.  So I prayed while I held my girl, all gangly limbs curling over my arms, one of the longest, most heartfelt prayer I’ve prayed with her.  It was long after she fell limp in my arms that I closed the prayer, my own eyes moist and damp.

I hefted her 75lb, nearly as tall as me frame, into her bedroom and tucked her in.  Asleep.

Mission Accomplished.

But at what cost?  Would she be mortified in the morning?  And how can I keep this from happening?  What’s she gonna do when she’s at college and noone knows to squeeze her feet, hands and compress her other joints?

These and other racing thoughts plagued my exhausted mind such that I gave voice to them with the hiccuping sobs that I melted into on Seth’s lap.  It was now 11:30.  We’d battled for right at an hour and a half.

****

Sometime after midnight, we settled into bed.  And Christopher awoke.  Inconsolable.

We each took turns trying to soothe him.  But no amount of rocking, nursing, Orajel, Tylenol, or Motrin would help.

Around 3am was when Seth made his statement re: how this day was going to go down in my mind’s history.

It was then that the childish song popped into my mind, and I realized how this incident might have undone someone else, that someone else might have slipped into their own sleep-deprived, incoherent raging.

But that reserve from which I drew?

The rock upon which my faith is built, from which I draw my strength.

****

This week has been hard, as the sleeping has still yet to resume back to N-O-R-M-A-L, whatever that is anyway.  But I have to say that the fact that my husband is an angel, my sister-in-law’s empathic gesture of just BEING with me, and a silly little song have all helped remind me that I’m not alone and I don’t have to do this all by myself.

Advertisements

I'm a 30-something with a bend toward the spunky and unconventional. I like to accent big words and academics with slang and pop culture - makes me a little more well-rounded. My husband and I follow Christ and am training up my 3 precious kiddos to do the same. This means that I'm human and I fail - a LOT, but there is beauty in sharing that with others. Last, but not least, in case you haven't noticed, I'm prone to rambling. It may seem unrelated to you but the little "tangents" I go on are all interconnected in my mind!

Retro Ramblings

(c) 2006-Present