First Day Do-Over

Today was not the first day of school for my son. 

Last year...

I will not allow today to be classified as his first day of preschool in the 4’s Classroom at his wonderful children’s center near our home in Denver.  Because I believe my son and I deserve a First Day of School Do-Over. 

A Do-Over where:

-he is physically able to stay in the classroom without suffering from major anxiety due to sensory overload. 

-he doesn’t have to sit on the floor out in the hallway on his mom’s lap because it’s less chaotic, when all the other parents have left the building for a few hours so the kids could get used to their new classroom, teachers and classmates. 

-he won’t have to go all the way outside and sit on a bench with his mom while the other kids get to eat snack together for the first time in their new classroom. 

-friendly and helpful teachers and parents don’t bombard him from all angles with loving pats on the head, back or shoulders because they don’t realize that to my son, a soft touch on the arm can feel like a punch, scratch or scrape.  (Yes, a well-meant, gentle and innocent sign of affection for neurotypical people can feel like physical assault for him.)

-there are no tears.  From his own mom.  In public when she’s supposed to be strong and hold it together for him.

Today was not the first day for many reasons...

Technically you could call today the first day of school for the 4’s Class, because the kids had an abbreviated “meet the class and teacher” type of morning – just kiddos.  No parents (well, I ended up being there the whole time).  The first full day of school is next Wednesday.  Wednesday will be our First Day of School Do-Over Day.

It was not the first day for him at a new preschool – he attended the same school last year in the 3’s Classroom.  It was not his first day entering a new school building with a new preschool director, new teachers, new classmates, and new parents– the building is the same, same lovely and accommodating director, we know three out of four of his teachers, and seven out of the 11 kids in his class. 

Next Wednesday is when:

-we will take the obligatory first day of school photo with my son holding up some type of chalkboard or sign inscribed with school and developmental milestone information that nobody will read.  Perhaps I’ll even do a side-by-side collage of last year and this year’s pics or some crap. 

-we will take him out for ice cream to celebrate a new school year. 

-he will have his brand new John Deere backpack, John Deere snack bag, John Deere lunch bag, and green and yellow first day of school Saucony sneakers.  (That I ordered on Amazon.  That arrived on our doorstep exactly two hours after today’s morning at school.) 

-I will have all of his required paperwork turned in so there is no concern or worry about if he is legally allowed to stay. (The paperwork I planned on finishing and turning into the school office when I picked him up today.  I didn’t have the chance to leave school – hence, no paperwork.)

-I will create, laminate and distribute a sensory profile for my son’s teachers, including information on his sensory triggers, signs of dysregulation, and specific ways to accommodate for his needs.  (Lots of extra behind-the-scenes work on my end, but needs to be done.)

-I will hopefully be able to drop my son off at his classroom, leave the building, and run errands or clean the house.  Just like the other parents.  Parents of kids who do not have Sensory Processing Disorder.

Stay tuned for a First Day of School Do-Over Day picture of my amazing son.  Because cliché will tell you that there is a first time for everything.  And I will tell you that if that first time happens and it’s heartbreakingly tough, I will dig my heels in and orchestrate a joyful First Day Do-Over for him.  

Everything I Am Not

Like frail foliage fading on a magnificent mountainside, indulgently parched, am I.

I am a resoundingly blue sky daubed with hopeful clouds - swollen, distended drifters.  I am dry, yet soft. Jagged and withered, strong and tall. Simultaneously wilt and bloom, do I.

I am warm, playful gusty wind, mischievously embraced by the sun.   I am cool, still water – reflectively crisp.  I ebb, flow, gush, ripple and halt.  A whimpering howl, am I.

I am dropped, scattered, seeds making my fateful journey bound for a fresh beginning.  I am the stubborn few clutching to the barren stem.  I am wholly shattered. Harmoniously bold and muted. Enthusiastically jaded, am I.

I am vividly bright, dazzlingly opalescent.  A misconstrued blotch of brown, green, white and blue.  Duplicitous dark shadows shade and distort - neither holding me up nor dragging me down.  Pleasantly pliable, am I.

I am feebly exquisite and honorably scarred. 

Painfully proud, am I.

Decency Despite Dysfunction

45 minutes.

I spent 45 minutes on the Wal-Mart floor today (you read that right) waiting for my son's sensory meltdown to subside. 

We were there for Pull Ups and Children's Claritin. I would have left our cart in the middle of the aisle and calmly carried him straight out of there kicking and screaming...if we didn't absolutely need those two items.  Instead, I cradled my 4-year-old as he shook, kicked, screamed and bawled in my arms. We were in a sensory stalemate, if you will, and we needed to ride it out until it subsided and we could calmly make our next move.  "Riding it out," this time, occurred sitting in the middle of the Wal-Mart floor.

All because: I wouldn't buy him a toy.

To onlookers, that's what it most certainly must have seemed like. And boy...did I get cross looks, stares, and eye rolls.  It felt like their glares were burning a  harsh tattoo of judgement straight across my weary forehead that read: BAD MOM.

I try to explain to people that his meltdowns aren't ever really about "the toy."  Not getting the toy is just the thing that sent him over the edge. The build-up started well before we made it to the toy aisle.  When we first walked into the store, an employee was pushing a long line of shopping carts inside and they crashed (loudly and unexpectedly) into the wall next to us. TJ had also never been to this store so the surroundings were unfamiliar (he knows his way around Target though people...let's be real). In addition, he was hungry and tired, and the kicker - his mom has been really friggin sick for months now. By the time I told him "no" in response to getting the toy, he was DONE.

This is what SPD looks like, folks. It Iooks like a spoiled little boy who wants a toy and throws a fit if he doesn't get his way. It looks like a whiny, bratty little kid whose mom lets him walk all over him. For the few seconds that passers-by notice a screaming four-year-old in his mom's lap sitting in the middle of an aisle in Wal-Mart, it can look to them like the mom is a big hot mess who doesn't have her $hit together.

What I wish people COULD see is that my little boy is a sweetheart who says the words "I love you" at least 20 times a day. He loves vehicles and cats and turns out he is really good with directions. He uses words like "impressive" and "hoist" and loves to sing "The Tree Farm" radio jingle. He struggles more each day than many kids we know, and is basically just trying desperately to hold his own $hit together.

Thank you...to the few kind strangers who stopped to ask if we were okay, even though they had no clue about our situation and chose not to judge. Most importantly, thank you to the one woman who whispered to me, 

You're a wonderful mom...I wish all moms could be like you.

Those words hit me like a ton of bricks and immediately, even though I had been trying to hold them back so TJ wouldn't see them, my tears began to flow.

I realize that he can't control his meltdowns...that sensory overload takes over and he becomes unable to process information in a functional way. I will hug him and validate his feelings and tell him that it's ok to be sad and disappointed. But when I have the time, wherewithal and strength, I will do my best to stick to my boundaries and teach him to be a decent human being even though things are hard for him. It seemed like 3 hours, but I stood my ground and he did not get that toy.

Today's lesson on human decency, despite debilitating dysfunction, brought to you by Sensory Processing Disorder, our messy Wal-Mart meltdown, and a stranger's whispered words.

It's Not Always Rainbows and Butterflies

"I DON'T WANT YOU TO HOLD ME DOWN!  NO THANK YOU!  NO THANK YOU!  IT HURTS ME!  WHY ARE YOU DOING THIS, MOMMY?  STOP!  PLEASE!"

Tears streamed from my son TJ's red, hot, blotchy four-year-old face as he struggled to catch his breath. I felt his little heart pounding through his chest between the soft brown blanket I wrapped him in, and the weight of my body.  He thrashed his head backward and headbutted me, and then quickly turned his head to the side and sunk his tiny, sharp teeth into my bare shoulder.  I yelped in pain as I immediately scanned the imaginary file of new information in my brain that I just gleaned from his (absolutely amazing and wonderful) occupational therapist yesterday.

File tab label reads: Co-Regulation Strategies and Keeping Yourself Safe During Violent Meltdowns

I frantically scanned the file...

-Look for signs of dis-regulation (damn...way too late for this!)
-Keep yourself calm (uhhhhhh...ok?)
-Find a soft blanket and a soft place, such as a couch or cushy chair (check)
-Wrap child's arms in blanket and hold him down with light pressure (check)
-Less talking, more doing (#fail)
-Tell child you need to keep yourself safe (check)
-Breathe deeply (#fail)
-Reassure child they are safe (check)
-Child should fatigue faster and eventually calm down (eventually)

What actually happened:

-My son kicked me in the lower abdomen before I could get him fully wrapped in the soft blanket (I have an autoimmune disease called interstitial cystitis and am currently in a flare.  That kick? It did not feel good.)
-I immediately started crying as I held him down
-I repeated, way too many times, that I needed to keep myself safe and that I hated holding him down
-I incessantly told him how much I loved him, and that things would be okay
-I slowly let him out of the burrito blanket because it was torture for me - way too soon - and he immediately grabbed a heavy metal toy truck and hurled it at my head
-I started the process over and forced myself to be strong and take as much emotion out of the situation as I could
-I felt guilty and like a horrible parent the ENTIRE time
-Eventually he was able to calm down, stop hurting me and relax on the couch with his headphones and tablet (no judging...I have to pick my battles)
-I called TJ's occupational therapist to explain the situation, cried to her, and cancelled his appointment at the STAR Institute for Sensory Processing Disorder that was scheduled for later this afternoon
-Finally, I seriously contemplated adding vodka to my iced coffee

*

Today, I blame mac and cheese.

I stirred the cheese powder into my son's lunch after it came out of the microwave.  He wanted to do it.  I wasn't aware.  Thirty minutes later, I'm on top of his little body, holding him down so I don't collect any additional scratches, bruises or bite marks.

The entire meltdown lasted about 35 minutes.  Much, much shorter than Monday's one hour and 45 minutes.  Mark my words, however...they all feel like hours to me.  Never-ending soul-crushers.  Today I had a steaming bowl of mac and cheese hurled at me.  Three toy trucks.  My own phone.  And a glass of milk.  Not really all that much, compared to the usual amount of destruction and mayhem as a result of TJ's sensory overload.  Televisions (yes, plural) have been broken.  Mirrors shattered.  Lamps, fans, and numerous other household items and toys, broken.

My husband and I are learning that it is never really about mac and cheese.  Or a pink sucker (this morning).  Or taking his own shoes off (last week).  Or "insert typical four-year-old problem here" (almost every day).  My son's meltdowns, which are completely different than tantrums if you're familiar with the world of Sensory Processing Disorder, are a result of a cumulative collection of sensory experiences that his brain simply can't handle.  And his cup spills.  Or explodes.  Rarely does it just drip.

Today, it feels like a bomb exploded in our house.  In a sense, I believe that one has.

As much as I can try to explain to outsiders how quickly our days can unravel, I just truly feel like I am very much alone.  TJ's explosive meltdowns typically happen at home.  My husband Mark has the pleasure of being around for them sometimes, but usually, I'm the only one around.  He does a really great job of holding things together at school, in stores, at other people's houses, etc.  He knows he is safe and loved at home and since he is with me a majority of the time, his cup spills directly onto me.

*

Life around here is messy.  Certainly not always pretty.

So for every selfie I post on social media because I just did my makeup and I feel halfway decent - know that a landmine has probably already gone off in our house, or is about to.  For every pretty piece of art I make or picture of our beautiful mountain property I take, we arrive 45 minutes to an hour late for summer camp (that was this morning, because I was holding TJ in my lap in the front seat of my car as he wailed and cried, patiently waiting for his emotions to regulate so I can buckle him into his car seat and get moving).  New outfit or toy...missed birthday party or social gathering.  You get the idea.

Rainbows and butterflies?
Not always.

Not when it comes to life with Sensory Processing Disorder.

First Things Gray

You, first.

I've heard this many times over the last few months:

"The most important thing right now is to take care of yourself first."
"In order to take care of others, you first need to take care of yourself."
"What have you been doing recently to take care of YOU?"

I get it.  Put your oxygen mask on before the person next to you.  Makes sense.  It's black and white. On an airplane, it is.  Your mask first so you can help others. Check.  Black and white is easy.  It's either this, or that.  Yes or no.  Left or right. Stop or go.

An entire spectrum of gray, however -  has been paralyzing. Lately I've been trudging through life with a mucked up mind, and as a result, I've simply felt stuck in my tracks.  Cemented, but certainly not grounded.  The matters of my mind have splattered together into a big heap of cracked, dusty clay.

I've been under the assumption that my recent gray matters (no, not the good gray matter!) have been a result of life's stressors. Things are tough and heavy right now.  Sure.  I mean, I'm seeing cloudy floating spots at this very moment as I type from anxiety.  But I've been stressed and stuck many times before and I've managed to carve a rough path through the gunk and forge ahead, nonetheless.

I think I finally realized that what really has been fuzzy for me (not warm and fuzzy...more like bleary fuzzy) hasn't been my list of new and specific daily challenges. Don't get me wrong, they've added to the dusty film. However, the majority of what has cemented me in place, ironically, is not very concrete.

Why can't I dig deep and find my momentum to rise above the grime these days?  My guess is that  I just don't know who I am, who I'm supposed to be, or exactly what I'm supposed to do during this particular stage in my life.

How exactly can you put yourself first, when you've completely lost sight of  the colorful person you used to be?  Seems like all of life's "gray," well, it matters more than I realize sometimes.