Tag Archives: sensory processing disorder

Ride the Train Over to the SPD Blogger Network

Good morning, Friends.

Today I am honored to be a guest over at The SPD Blogger Network (SPDBN)!

Come see me –>HERE<–.

About SPDBN:

“This group blog is designed for those writing – or those who want to write –  about raising a child with Sensory Processing Disorder.  This is a  place to share stories.  All of our stories.

Potty training nightmares, sleeping challenges, Occupational Therapy success, picky picky eating (or none at all), social skills challenges, meltdowns at the grocery store, and the every day chaos (and joy) that is raising a child with SPD.  Here is a place for you to write it all down.”

It’s an amazing gathering place for all things sensory.  Come visit me over at the SPD Blogger Network today!  I am honored to have pulled up a keyboard and joined an amazing group of people riding the same train.  Did you know that both RM & The Boy experience Sensory Processing Disorder?  Grab your ticket and hop on the train for a few and see what we’re all about!  Join us at SPDBN!

Cheers,

Rachel

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Whip Me Up

It was the first thing I noticed this morning as I dragged my weary bones out of bed.  That unmistakable autumn howl here in New England.  An eerie, echoing wind that is difficult to do justice if you don’t already know its sound.  

It whips around, weaving in and out of the cookie-cutter ranch homes on our street.  It lifts the reddened leaves from the pavement and scatters them elsewhere.  I can smell the wind slipping in through the cracks around our doors and windows and I think to myself that perhaps it will be a very cold winter this year.  

But today looks as though it will be a beautiful day – dotted high clouds and a sharp crisp in the air.  But I’m not buying it.  I am angry.  I feel battered and beaten. 

I know how to make good from the bad.  I have had lots of practice in the last several years.  I really do often fight the urge to complain, rather I embrace the suckage and try to find the silver lining.  That damned silver lining. 

We have had success at hockey games before with RM, but this time she unraveled right before my eyes – and so did I.  It didn’t matter what I had packed in to make her comfortable or whether I bought her soda – or a doughnut – or a pony at that point – it just was physically painful for her.  But we had rinkside seats yesterday that were a gracious gift from dear friends and The Boy had nearly shat himself with excitement to experience a game all up in his face.  So when RM began screaming NO!!! I took her out into the concourse to give her a chance to regroup.  It never happened. 

I felt like one of those color-streaked leaves being lifted and slammed onto the pavement – over and over again.  I can only imagine how much more painful it was for my baby girl.  

Silver lining.  Silver lining. 

Ok.  There was a silver lining to my baby’s pain yesterday.  Unfortunately for her, it was the joy that hockey game brought to her brother.  It was the small amount of time that The Boy and his Daddy sat together on the glass and watched two awesome fights break out right in front of their eyes.  It was the soda and popcorn and fist-pumping and cheering that The Boy ate up like candy.  

And it was the comfort I witnessed as The Boy took RM’s hand in the car on the ride home and just held it for a spell.  That damned silver lining was there in the moments of conversation that evening with The Boy and the opportunity to hear him recap the 2nd Period and how the glass shook from the glorious violence of a great game of hockey.  I watched and listened as his face glowed while he spewed all the gory details. 

 Then The Boy’s tears came and I panicked and my heart pounded as I thought Dear GOD, what next?  I cannot take any more suffering tonight!  “I felt so sorry that you and [RM] were stuck out in the lobby that whole time.  I’m sad that she hurt.” 

Silver lining.  Silver lining. 

“I get that, Snugglebear.  But you listen to me and you promise me something, ok?  Don’t you ever feel sorry for your sister.  Not ever.  She is happy.  And she is perfect just like you.  And she hurts sometimes, yes, just like you.  But don’t you ever feel sorry for her.”

I grabbed my son’s increasingly large and lanky body up into my arms and squeezed him so tight.  I felt so close to him and suddenly so relieved that this moment had come to me – a silver lining – out of a day of pain. 

The Boy loves his baby sister and I am really so blessed.  No matter the winds that howl around us and threaten to whip us up and batter our hearts – there are beautiful days ahead.  I will spend a little more time today being angry and feeling beaten because I am allowed to do so.  We all are.  But then I will step outside and welcome the sun once again. 

It’s what I do.

 


Rock Star

 

What really defines a Rock Star?

I’m talking REAL. FANS. WAVING. LIGHTERS. ROCK. STARS.

You know who I am referring to here – the likes of Mick Jagger, Steven Tyler, Jon Bon Jovi and Bono – guys that have been consistently rocking it out for millions of fans for decades and never disappoint.  They are a rare breed of superstar that have escaped the need for radical reinvention of themselves – only an updated haircut seems to have been required for this bunch of Rock ‘n’ Rollers.  They just keep putting themselves out there and making magic.  Every time.

I have some experience in the entertainment industry.  I have seen a lot of what goes on backstage and I have to tell you these new reality shows looking to find the next big star are using the wrong criteria.  Sure, they may showcase some extremely talented folks but the chances of finding that singularly incredible Rock Star are slim to none.  Why?  Because the true definition of a Rock Star not only includes talent, but growth from within that moves that person to share their song with the world – not in vain, but with fervor to make a difference in this world.

I need to let you all in on a secret I have been keeping for years now – I just cannot contain it any longer.

I gave birth to a Rock Star nearly eight years ago.

It was pretty clear from the start that there was something really special about this child.  He had some innate ability to insert himself into people’s hearts.  He smiled early – no, it wasn’t gas, I assure you – he just connected in a way few babies do.  There was pure joy aglow in his eyes.  As a toddler, his giggles would travel through every person in the room with a contagiousness I simply had never seen before.  The Boy was an easy-peasy baby.  He slept through the night at seven-weeks-old and would refuel with 15-ounce bottles of formula using speed and precision that rivals NASCAR pit crews.  At the age of three, The Boy was still napping twice a day and growing so fast I could hardly keep him clothed.  I barely saw this child for the first four years as he slept nearly 18 of the 24 hours in a day.

And he was always HAPPY.

In 2006, his baby sister arrived.  The Boy was barely three when RM came home.  RM’s first year is a book in itself, so someday I will reopen the old wounds and share – but today is about The Boy.  From the very beginning of RM – the hospital, surgeries, tubes, endless doctors, piles of medications and the huge markerboard that filled our hallway listing the what/how/when of caring for RM – through it all my Boy was a Rock Star in the making. 

The Boy hasn’t been many places.  Early on, RM’s health kept us away from public playscapes, parks and restaurants.  We stayed home all the time.  We made the best of it.  For much of the time SGM was deployed and I was simply trying to keep us ALIVE – a trip to Chuck E. Cheese was NOT happening.  If we had a box of mac’n’cheese left in the cupboard we were doing good.  I didn’t have respite care for myself or for The Boy so while I spent 24/7 caring for RM and her feeding tube and changing her out of puke every time I turned around – there just wasn’t much left but love. 

Love.

That’s it.  Snuggles at night when I pulled him into bed with me, just the two of us in the quiet.  A mother wrapping her love tightly around her baby boy.  A kiss and an ‘I love you, SnuggleBear’ every time I passed by him, sometimes a dozen an hour.  That’s all I had left to give.

It was enough for my Rock Star.

He was STILL A HAPPY KID.  His beaming smile captivated people’s attention.  He grew fiercely protective of his baby sister AND his Mama.  He helped with any little thing he could.  He never complained that we didn’t go places and he never asked for more than he knew I could give at any time.  He cherished what I had to offer and in kind, he offered all he had to RM.  He would read to her and let her play near him while touching all of his stuff.  He didn’t seem to mind that she would chew all of the tires off of his prized matchbox cars.  Instead, he would cheer her on with every new accomplishment.  He would spend hours teaching her – patiently.  The Boy single-handedly taught his baby sister how to count to Ten.  He would sing to her – Dear God – he would sing so sweetly to her.

This Boy of mine – this amazing creation sent to me was SAVING ME.  His song was lifting me up and his love was speaking to me.  My Rock Star was showing me the way.

Now about to turn eight, he continues to be the most loving big brother to RM who is turning five.  He has overcome many of his own sensory processing issues.  But something even more spectacular is happening.  The Boy is becoming increasingly more sure of himself and his place in this world – at the ripe old age of eight.  He is expressing thoughts outside of his role in this house and having FUN finding his own interests.  He is stepping out of his shell and engaging in a life that more resembles what it should be – giggles, being a goofball, running with ‘the guys’ and having his first crush on a cutie down the street from us. 

So where’s that next new, magical Rock Star?

Right here.

He’s putting himself out there and making magic.  And he’s updated his hair to prove it.

The Boy, June 2011

[I Love Rock ‘n’ Roll by Joan Jett]


Autism Is…

 

Autism Is…

a 47-pound, almost-5-year-old in diapers who thinks the toilet is a playground.

wild nights with no means to quiet, calm or comfort your child. 

locks on everything – everywhere – praying that your child isn’t the next one to disappear in the middle of the night, never to be seen again.

not knowing what your child thinks or feels.

not knowing when or where your child is in pain. 

saying, “I love you, Baby” a thousand times and never hearing it back.

feeling desperate for a hug from your child, knowing that they will push you away every time.

expensive.

isolating – few people understand what this life is like, even fewer stick around to try.

lines of Pixar Cars in front of the cable box – again – in the exact same order – blocking the remote signal and reminding me – again – that autism sucks.

repetitive – it is the same song, the same movie, the same word OVER AND OVER AND OVER AGAIN.

a never-ending fight to get the education your child deserves.

24/7 fight or flight exhaustion – there is always something else waiting to attack – diet, sickness, behavior, education, social anxiety, sensory overload, fear.

devastating to siblings.

never letting your child out of your sight, no matter how old they get.

living in a bubble of constant worry.

still washing, wiping, brushing, bathing, diapering and dressing your kid who is able to ride a tricycle and read 200 words but cannot do these simple self-help tasks.

picking plates and silverware out of the garbage.

cleaning up puke that was never going to make it into the bowl on her lap – because the bowl was in her way.

never having fresh-cut flowers or scented candles on the table.

always putting every pen, pencil, marker, pair of scissors and tape dispenser in a locked drawer because you never know who or what will be drawn on, cut into a million little pieces or taped together permanently.

never finishing a cup of coffee while it is still hot.

sign language, picture schedules and social stories just to go to the store.

always carrying a spare set of clothes, shoes and extra hand-sanitizer because poop happens – and happens again – in the most bizarre places and is somehow irresistible to explore with little hands.

feeling the glare of strangers.

being an advocate, special education expert, dietician, physical therapist, occupational therapist, speech therapist and consultant without a paycheck.

being asked the stupidest questions on earth – “Are you sure it’s autism?”

hearing the absolute worst attempts at lightening the mood – “It’s the age, she’ll outgrow it.”

many inside jokes between you and your spouse that are not all that funny.  “5 – 4 – 3 – 2 – 1…” – the seconds we count out loud when our daughter actually comes to sit on our lap and how long she will stay before she becomes physically uncomfortable being so close.

getting hit and kicked repeatedly by your child because they just cannot tell you what/why they are so mad.

never going on a ‘real’ vacation – one that isn’t prepped with exit-strategies and backup plans and is ultimately destroyed with tantrums and sensory-overload.

a revolving door of babysitters – once in a while you actually get to have one.

date night on the couch with a Top Gear rerun and Ben & Jerry’s and maybe sitting next to your spouse, too.

listening to your fellow Warrior Mamas kicking some serious autism ass – and holding them up when they feel beaten down.

praying – praying ever so sincerely that things will get better – praying every moment that scary things like seizures and self-injurious behaviors will not win – praying for progress, however small.

selling your soul and your story to legislators when all you really want is a nap.

telling your story and putting yourself out there as vulnerable and needing help – when really you just want to fix it and make others understand why.

loving your child so fiercely it hurts – it hurts so very much – and you would do anything and everything in your power to make their life just a little easier.

hard.


Tailor-Made

[Editor’s note: I write this today in honor of one of my dearest friends and fellow Warrior Mama.  We have fought the good fight for our kids side by side, ended the toughest days over a bottle of wine and celebrated each other’s victories with sincere pride and joy.  Yet, we both can’t seem to shake the suit.  Cheers, CM.]

 

There is an empty hanger in my closet.  It’s been empty for nearly 5 years.  It just hangs there.  Waiting to be used again.

I have no recollection of purchasing the garment that came with that hanger.  But after researching its origin I have found that apparently such garments are handed out along with your child’s life-changing diagnosis.  And there is a No-Return policy.  It is two sizes too small and from what I read on the label, I am advised not to stand near an open flame while wearing it.

It is an ugly, tight, 100% itchy faux-wool suit.  And I’m wearing it right now.

I am uncomfortable – all of the time.  The zipper is broken so I am simply stuck in this suit no matter how hard I try to escape it.

It is very distracting.  Because of this damned suit I don’t sleep well unless medicated and quite frankly intimacy cloaked in an itchy wool suit is – well – challenging.  Not just with my husband – but my personal relationships with everyone.  Sometimes the opportunity for social interaction sends me scurrying for cover because in addition to the insult of wearing this thing, I just feel I cannot handle the onslaught of sensory input involved in being around people.  I start to think maybe I simply hate people in general.  Let’s face it – sometimes people just suck.

The constant irritation and feeling on-edge affects my concentration and ability to get things done, too.  Making a simple plan for dinner seems overwhelming.  I have difficulty enjoying the things I used to love before suiting up.  Sometimes just being in a moment with my family when things are actually calm and somewhat joyful, I still feel distracted by this scratchy, freaking outfit from hell.

The constant worry of how to manage everything and be prepared for whatever comes next is unbearable to my senses.  Being on heightened alert every moment of every day literally makes my skin crawl.

My child’s diagnosis is like an itchy suit I cannot take off and hide away in the closet.

And though I understand the purpose and even usefulness of this suit – I do wish with all my might that I could just take it off once in a while and maybe treat it with a little fabric softener and make use of that lonely hanger.


Baby, You’re a Firework

[Firework by Katy Perry]

Go ahead – Ask my crumbling shower walls.  They’ve heard it all.

Taken a beating and then taken some more. 

Good day?  Bad day?  CRAPTASTIC Day?  It’s all in the song…

How often do you find yourself completely enveloped in a song that seems to speak directly to you and tell of your heart in that very instance? 

At the same time you are experiencing the sounds of the music with your ears – your eardrums vibrating wildly – tiny hairs across your skin dance rhythmically, your senses are heightened as every neuron in your body fires in syncopation.

The arousing intro… that first verse that captures you… the chorus that makes you want to sing your heart out… the bridge that lulls you back into the theme… before bursting forth from your very core in a declaration of every emotion that has been buried within you… slowly building and building over time… you can no longer contain it… it takes on a booming voice of its own you never thought resided inside you…

“Baby, you’re a FIREWORK!”

 

One of the very first things we noticed about RM was her response to anything musical.  Whether it was a lullaby, a Signing Time dvd or a Sara Evans song. 

I have always sung to my children before they went to sleep.  A favorite of late is “Somewhere Over the Rainbow”… at Christmastime it was “Silent Night”.

One evening, as I was singing to my delicious babes, snuggled in tightly together and smelling sweetly of baby shampoo, I noticed something new. 

Or rather not new – but different.

If you love a child with autism, you are likely familiar with the term ‘hand-flapping’.  It varies from child to child.  It’s a form of ‘stimming’ or self-stimulating behavior – a mechanism by which many of our kids soothe and comfort themselves, or simply burn off an excess of nervous energy. 

RM’s hand-flapping is particularly her own.  For several months prior to her autism diagnosis, us proud and ridiculous parents thought she was brightly finger-spelling to herself in sign language.  Go figure.  She ‘flaps’ in a puppeteering motion with one hand close to her face as she stares at the movements of her long fingers.

Anyways… this night as I sang to her – her fingers began to move in such an orchestrated and delicate dance – ebbing and flowing back and forth with such precision, reminiscent of John Williams leading the Boston Pops through a 4th of July rendition of the 1812 Overture.  It struck me so hard it nearly knocked the song from my lips –

My child can SEE this song I am singing.

“…Cuz, Baby, you’re a FIREWORK!…”

Synesthesia is the neurological and involuntary “crossing” of one sensory or cognitive pathway with a second.  For example, a person who experiences synesthesia may hear a car horn and simultaneously feel pain, or a word written on a page may appear as each letter a different color.

 I KNOW that my child has gifts. 

I KNOW that she sees things most of us will never see.

I firmly believe that not only is her interpretation of the world a magical one – it is valid.

Though she may not have the words to express the song in her heart today, I know she is experiencing my love with a burst of colors that nothing can compare to.  I know that my love for her will carry her through the times when she feels like she is drifting through the wind, hoping she could start again. 

I know that when her skin feels paper-thin and her bundled nerves feel like a house of cards that are caving in – my love will save her.  Not because it is fierce and strong and unyielding to the exhaustion of a long day with autism, but because I know that she feels my love in more ways than one can imagine. 

She feels it tightly wrapped around her always – a booming firework exploding in light – smelling of sweet wildflowers and spring – and tasting like chocolate.

“…Baby, you’re a firework!… 

C’mon, show ‘em what you’re worth!”

 ♥

“…Even brighter than the MOON – MOON – MOON…”

*

 


Hockey is GOOD.

[Brass Bonanza by Jack Say]

Some of my fellow Mama Warriors are in need of positive vibes today…

I think RM can stack the pads on this one and make a save in the face of autism…

…because hockey is not only good, in some locales it is spelled H-O-P-E.

~~~~

New Englanders have a long tradition of rooting for underdogs… and standing behind our teams for decades with nothing to show for it but hope and fervor that SOMEDAY a Pennant win will lead to a World Series sweep, or a Playoff rumble result in the beloved Whalers hoisting a Stanley Cup in victory.

Oh, dear New Englanders… Ye of so much FAITH and HOPE…

As we speak, the most diehard of Red Sox fans are gearing up for a spring-training preemptive slaughter of the Yankees tonight in Fort Meyers, Florida.  Because the Red Sox have a tradition of starting out in early spring with fury… and often, over the years, losing their steam toward the end of the summer… and simply disappearing among the pack come autumn… you might have given up on the Sox a long time ago…

Let me tell you… you cannot go to a mall -or let’s say, a bar – in New England without spotting a Red Sox Fan.  The same could be said (perhaps only slightly smaller of scale) about a Whalers Fan… and that team doesn’t even live here anymore.

For those of you not familiar, Hartford was once home to the NHL Whalers Hockey Team.  I won’t go into detail, but many a death-threat were muttered angrily when the team was bought in the late ‘90s and essentially stripped of its hometown fans, colors, and Brass Bonanza… and quietly shipped off to North Carolina.  We were left with an AHL team… formerly the Wolfpack, now the CT Whale.

April is Autism Awareness Month, the Month of the Military Child, and the Month of Renewed Hope for all Red Sox fans…

So what about hockey?  Diehard Whalers fans that still linger among the New England populace enjoyed a resurgence of Whalermania this season with the Hartford Wolfpack’s makeover in homage to “The Whale”.  It has been a renewal of HOPE for hockey fans in Connecticut… maybe this April we should include a “Connecticut Hockey Fans for HOPE” campaign to keep the interest alive…

We went to a CT Whale game on Saturday.  ALL of us.

We sort of committed to a night of hockey dedicated to RM.  Meaning… even if we didn’t make it through the doors, it was ok (see my Church post).  Mom, Dad, and big brother had already had our hockey games this season that we enjoyed.  This was RM’s chance.

Maybe she would make it through the noisy parking garage with florescent lighting and odoriffic assaults like urine and stale beer.  Perhaps she would survive waiting in the Will Call line to get our tickets.  Either way, we had a tiny amount of HOPE, and that was enough to set out on such an adventure in honor of RM.

Not only did RM walk into the arena filled with noise, lights, and crowds of people – without a fuss and without headphones – SHE. LOVED. IT.

This kid went NUTS. GOOD nuts. I mean, REALLY… never before had my husband and I seen anything like it.  RM was enthralled with the “skating”…

          Oh, crap – what is the damned sign for ‘ice skating’? or ‘hockey’?

                            Screw it… we’ll improvise with ‘roller-skating’…  

My baby girl signed ‘skating’ with enthusiasm parallel to having ice cream for breakfast.  This was BIG. HUGE. WOW.

Ok… this can’t last (SGM and I looked at each other)… it just can’t be… She is clapping wildly to the music, bouncing so joyously in her seat that she is CATCHING AIR, People…

I look at the Sergeant Major again, beaming, and I say, “I am completely HIGH right now.  Like… on CRACK, I’m so high.  Can this really be???”

“Yep! Hockey is GOOD!” he says… beaming just as brightly.  RM quickly repeats, “OCK-ee GOO-ud!”  She is shaking, she is having such a great time.

Suddenly, the horn blasted the end of the 3rd period.

CT Whale – 4, Sharks – 2… it was over.

Our children – ‘CHILDREN’ as in PLURAL – had enjoyed an event with BOTH Mom and Dad… and popcorn, and soda, and laughter, and fist-pumping.  LOTS of fist-pumping.

MORE! I want MORE of THIS!

But April is coming… Whale and Whalers fans will soon hang up their throwback jerseys… and life will resume…

…except in THIS house where HOPE has made a late-season comeback, thrown a stick-check on autism and said, “Not today. Not this time.”

The Stanley Cup’s got nothing on what WE won this past weekend.  We won HOPE back for our family’s future.

It was a Gordie Howe Hat Trick.  SGM and I scored for our entire family – and kicked a little Autism Ass while we were at it.

Hockey IS good.

So is HOPE.

           Boston Red Sox… here we come!

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