Day #113 – The Greatest Treasure? Knowledge.

It seems fitting that at the end of the year I finally finish all of this writing about the senses…

Vestibular

Proprioceptive

Auditory

Touch

Oral

Smell

Visual

So, on this – the final day of 2014 – I introduce yet another new (to most of you) and final sense.  The Interoceptive Sense.  This is the sense that is “responsible for detecting internal regulation responses, such as respiration, hunger, heart rate, and the need for digestive elimination. (http://spdlife.org/aboutspd/senses/interoception.html)”

interoception

A decade ago today, Tucker was two years old and had a fever of 102.  For two days straight I had pumped him full of Tylenol and Advil (rotating basis, of course).  On New Years Day he was lying on top of me for comfort and began to seize.  His eyes rolled back in his head, his jaw clenched – it may have been the most frightening moment of my life.  I held his lifeless body as we rushed to the ER.  His fever had spiked, yet again – regardless of how many meds I had been giving him.

A year later he was playing in his first tee-ball game. It was 95 degrees outside.  He looked at me and whispered, ‘Mom.” I knew something was very wrong.  Very, very wrong. His eyes were glossy, his skin was bright red.  He was listless.  He was not sweating.  How could he not be sweating?

Soon after we went through a series of doctor appointments to come up with a diagnosis of Anhidrosis. According to the Mayo Clinic, “Anhidrosis is the inability to sweat normally. When you don’t sweat (perspire), your body can’t cool itself, which can lead to overheating and sometimes to heatstroke — a potentially fatal condition. (http://www.mayoclinic.org/diseases-conditions/anhidrosis/basics/definition/con-20033498)”

Was that fever when he was two connected to this diagnosis?  I was sure of it…and then he was identified as being on the spectrum.  Now, all of this was much more connected than ever before.

If his interoceptive system was under-responsive he would not feel these body sensations like the rest of us.

  • He may not feel hungry – thus the rotation of eating all the time and then never.  Why?  Because Tucker LITERALLY cannot feel hunger.
  • He may not feel the urge to have a bowel movement – thus experiencing chronic constipation.  Why?  Because Tucker LITERALLY cannot feel when it’s time to go (remember Day #97 – The Trouble With Going) .
  • He may not breathe or sweat when his body should – thus experiencing higher fevers and possible heatstroke.  Why?  Because Tucker’s body LITERALLY cannot feel the need to sweat.

Was it ‘just’ a fever or was his body not able to break the fever?

Was it anhidrosis or was it connected to being on the spectrum?

Then, I received the fateful checklist that I have been sharing with you over the past couple of months.  I read through each item and marked my fateful x.  If x marks the spot – then I had finally found it.  The ‘treasure’ I had been looking for all along…a treasure trove of answers.

The best kind of treasure there is.

Checklist from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:
_x_ becoming too hot or too cold sooner than others in the same environments; may not appear to ever get cold/hot, may not be able to maintain body temperature effectively
_x_ difficulty in extreme temperatures or going from one extreme to another (i.e., winter, summer, going from air conditioning to outside heat, a heated house to the cold outside)
_x_ respiration that is too fast, too slow, or cannot switch from one to the other easily as the body demands an appropriate respiratory response
_x_ heart rate that speeds up or slows down too fast or too slow based on the demands imposed on it
_x_ respiration and heart rate that takes longer than what is expected to slow down during or after exertion or fear
_x_ severe/several mood swings throughout the day (angry to happy in short periods of time, perhaps without visible cause)
_x_ unpredictable state of arousal or inability to control arousal level (hyper to lethargic, quickly, vacillating between the two; over stimulated to under stimulated, within hours or days, depending on activity and setting, etc.)
_x_ frequent constipation or diarrhea, or mixed during the same day or over a few days
__ difficulty with potty training; does not seem to know when he/she has to go (i.e., cannot feel the necessary sensation that bowel or bladder are full
_x_ unable to regulate thirst; always thirsty, never thirsty, or oscillates back and forth
_x_ unable to regulate hunger; eats all the time, won’t eat at all, unable to feel full/hungry
_x_ unable to regulate appetite; has little to no appetite and/or will be “starving” one minute then full two bites later, then back to hungry again (prone to eating disorders and/or failure to thrive)

Day #112 – Lifelong Learning

The nature of being ‘hypo’ something means that not enough channels in the brain are ‘open.’ Therefore, not enough stimulation gets in and the brain is deprived of what it needs to function.  While researching ‘hypo-visual’ness’ I grew increasingly concerned. Sometimes you read something and wipe a bead a sweat off your forehead in relief. Other times…the sweat just continues to fall.

The spectrum stuff can be both, simultaneously. That is what I experienced while thinking about and researching being hyper-visual. Notice that there aren’t many checks on the original list below. This list was provided early on in our spectrum journey.

But then I found this…

The hypo visual child lives in a fascinating world. They see the world in 3-d form. These children love their own reflections and can sit hours in front of a mirror playing and making funny faces. They will be obsessed with shadows and are often misunderstood as extremely retarded [sic] because of their odd behavior. However, this behavior is actually related to the obsession with shadows. Every step such a child takes is by watching and following a shadow. Often it sounds like they are playing with some unseen object when in fact they are playing with their shadows or reflections.

These children will refuse anything that has to do with fine motor skills. Such as writing, coloring, painting, pasting, etc. they might also be afraid of heights and steps. These children are fascinated by edges and will often view them up close. Playing with small light weight objects, throwing them down and viewing their fall is a favorite past time. Also playing with a pencil follow it while turning it and watching it closely, is an often activity. Playing with water watching it dripping is one of the most enjoyable things. They would also attempt to line up objects and slowly walking around them as if trying to determine their position in space. These children also seem to see things higher up then they really are. For instance a floor would sound much higher than it really is. This may cause in dropping objects too strongly as they think they reached the floor, when it is actually much lower. Stepping back and forth from one color to the other or frequently falling when stepping off a rug is also a sign of a hypo visual problem. This problem is usually not detected at a regular eye exam, and mostly low vision doctors will detect this problem. (http://www.aplusrehabcenter.com/#!__severe-autism-4)

Ho hum…nothing from the list below – yet, SO many behaviors in the above description.

It’s one of the first moments that I knew something was very different about Tucker.  When he was a toddler he would watch television backwards. Huh?

After his nightly bath I would let him lay/sit in my bed and watch television for 30 minutes or so while I cleaned up from the day.  Every night I would walk in and find him staring out of [what I thought] the window.  It took me a bit, but finally I realized he was watching the reflection of the television.  Then I began to notice that he rarely watched television straight on – he watched it upside down with his head hanging off the couch where your knees belong.  He watched sideways, laying down – but rarely, very rarely did he just sit and watch.

It wasn’t until now that I realize why – he sees the world in 3D.  Let me tell you – a WHOLE LOTTA stuff makes sense now.  Right now, in this instant – I’ve just put another piece of his puzzle together.

puzzle-3d

I love this writing because I love sharing our story.  Most of all I love this writing because I continue to learn and as I learn Tucker’s world makes a bit more sense to me.

Checklist from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:

__ has difficulty telling the difference between similar printed letters or figures; i.e., p & q, b & d, + and x, or square and rectangle
__ has a hard time seeing the “big picture”; i.e., focuses on the details or patterns within the picture
__ has difficulty locating items among other items; i.e., papers on a desk, clothes in a drawer, items on a grocery shelf, or toys in a bin/toy box
__ often loses place when copying from a book or the chalkboard
__ difficulty controlling eye movement to track and follow moving objects
__ has difficulty telling the difference between different colors, shapes, and sizes
__ often loses his/her place while reading or doing math problems
__ makes reversals in words or letters when copying, or reads words backwards; i.e., “was” for “saw” and “no” for “on” after first grade
__ complains about “seeing double”
__ difficulty finding differences in pictures, words, symbols, or objects
__ difficulty with consistent spacing and size of letters during writing and/or lining up numbers in math problems
__ difficulty with jigsaw puzzles, copying shapes, and/or cutting/tracing along a line
__ tends to write at a slant (up or down hill) on a page
__ confuses left and right
__ fatigues easily with schoolwork
_x_ difficulty judging spatial relationships in the environment; i.e., bumps into objects/people or missteps on curbs and stairs

Day #111 – My eyes, my eyes!!!

Friends is ‘my’ show – it was with me during the ‘prime years’ of my life.  When I started thinking about being hypersensitive to visual input, I couldn’t help to think of the episode where Phoebe sees Monica and Chandler…well…you know.

She screams, “My eyes!  My eyes!”

This must be how Tucker sometimes feels.  The overstimulation that comes from all of his senses often manifests itself in him covering his eyes – with sweatshirts, with blankets, with shoes, with anything that is readily available. Too much noise, too many lights, too many smells, and he will bury his head.

I love music – and so does he.  For quite some time I have been sad that he cannot go to a concert – to see and hear the music live.  Now, honestly – I don’t know that he cannot go, but if 1+1=2…well then a concert wouldn’t go well. The amount of input his eyes would take in would most likely send him over a cliff…

Unless it was in a smaller venue…
Unless I could create a schedule…
Unless there was an easy way out…
Unless I could arrange accommodations before hand…

How would I ever accomplish that?

About a month ago I made a choice (See Day #94 – Whoops I Did it Again) to run a 1/2 marathon.  I may be nuts, but there is good reason for me to run. I generally run for my own health and well-being…this time I’m running for Tucker and if that doesn’t keep me moving, I don’t know what will.

A summary of Day #94….

TobyMac is a very popular Christian musician that supports the New Hope Academy.  The school supports underprivileged children. Part of his mission in supporting the school is creating a team for the Nashville Country Music Marathon.  Participants on his team pledge to raise at least $1,000 for the school.

I dig that.

If you raise $1,000 your reward is a private concert.

I dig that.

One of our longstanding theme songs for Tucker?  Get Back Up Again.

We lose our way,
We get back up again
It’s never too late to get back up again,
One day you will shine again,
You may be knocked down,
But not out forever,
Lose our way,
We get back up again,
So get up, get up,
You gonna shine again,
Never too late to get back up again,
You may be knocked down,
But not out forever

The Tucker and mom theme song…

For me – when I get down about this thing called autism.  Keep on moving, get up, wipe away the tears, count your current blessings, and keep trying.

For him – when he gets frustrated with his brain.  Get back up again, Tucker.  Get back up – it’s never too late to try again. You will shine again.

I contacted the folks in charge of Run for Hope about my intentions – mostly because I wanted to make sure that Estelle could take part in the activities.  When they read Day #94 they reached out to me and we’re already creating plans for Tucker!  Making plans to control the visual stimulation (and general overstimulation) that may occur.  They are amazing people – and truly understand the challenge(s) that he may face.

If you need one last tax write-off before the year or just feel inclined to support the New Hope Academy (http://www.nhafranklin.org)- here is my giving page.

http://www.firstgiving.com/fundraiser/NicholeHarken/runforhope2015teamtobymac

Checklist from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:

_x_ sensitive to bright lights; will squint, cover eyes, cry and/or get headaches from the light
__ has difficulty keeping eyes focused on task/activity he/she is working on for an appropriate amount of time
_x_ easily distracted by other visual stimuli in the room; i.e., movement, decorations, toys, windows, doorways etc.
_x_ has difficulty in bright colorful rooms or a dimly lit room
__ rubs his/her eyes, has watery eyes or gets headaches after reading or watching TV
_x_ avoids eye contact
_x_ enjoys playing in the dark

Day #110 – Smokin’ ‘n Whiskey Drinkin’

When I began thinking about having hypo-olfactory issues (or being a hyposmeller) I couldn’t help but think of the clip from Dr. Doolittle. Watch the first 25 seconds.

Now, this is obviously an exaggeration – but is reminiscent of what children on the spectrum may experience if they are ‘hypo-olfactory.’ While we don’t have any immediate experience with this (no checks on the list below) – I can imagine and do have an understanding of being hypo-olfactory.

My husband’s dad was a smoker – he’s long since quit, but my hubby grew up with him smoking in the car (don’t judge, folks – it was the 1970’s…at least he was only smoking nicotine). The result? My hubby can’t smell a thing. I’m not kidding – it’s one of the funnier moments in my house – Tucker is going on and on and on about a smell and the dude can’t smell a thing! Although he’s not on the spectrum and is not a hyposmeller, he does experience a similar olfactory life.

Like all ‘hypo’ sensory issues – a child that is a hyposmeller will be drawn to smells. They will [most likely] join you in the kitchen while baking. They will try to make sense out of their environment by smelling – toys, grass, shoes, laundry…just like a puppy.

This can very very serious. As you can see from the list below – these children (or adults) may eat or drink something that is poisonous because they do not notice the noxious smell.  Obviously – this can be very dangerous.  Oddly enough – it reminds me of last night.  His parents took us out to eat to a nice restaurant for his birthday.  At the end of our meal he ordered a sipper of the ‘Woodford Reseve Master’s Collection Sonoma-Cutrere Pinot Noir Finish.‘ Thank you to Google for that.

Let me repeat that he ordered it straight up (like usual-with only a couple cubes of ice).

Let me tell you – I couldn’t get it past my nose.  I’m nearly positive that I burned EVERY nose hair even trying to smell it.

When trying to smell it, I gagged.  Like not just ‘oh that smells bad’ – but I made a bit of a scene and was ‘overly-dramatic’ at the table.  I didn’t think I was overly dramatic…but he did.

I guess it all makes sense though – as I wrote yesterday, “While taste and smell are separate ‘senses’  with their own organs, they are intimately intertwined.” If his sense of smell was diminished by smoking then it makes perfect sense that he cannot smell the whiskey (aka poison).

At least that’s how I’m making the ‘overly dramatic’ business okay in my head…

Checklist from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:
__ has difficulty discriminating unpleasant odors
__ may drink or eat things that are poisonous because they do not notice the noxious smell
__ unable to identify smells from scratch ‘n sniff stickers
__ does not notice odors that others usually complain about
__ fails to notice or ignores unpleasant odors
__ makes excessive use of smelling when introduced to objects, people, or places
__ uses smell to interact with objects

Day #109 – Scratch ‘n Sniff

Back to the making sense of the senses.  Today’s sense?  Olfactory – better known as your smelling sense. How interesting is this?

“Smell input is the only sensory information that travels directly to the limbic system of the brain, the center of our emotions and memories. That’s why nothing taps into our feelings quite like smells.”(http://sensorysmarts.com/AADMay11.pdf)

The deal is that ‘smelling that smell’ doesn’t simply cause a ‘that stinks’ reaction.  It can be a full-on meltdown of agonizing proportions.  The real trouble is that it isn’t just a ‘fart’ smell or a ‘skunk’ smell that causes the reaction.

Onions cause the reaction.
Garlic causes the reaction.
A wet dog causes the reaction.
Burnt popcorn causes the reaction.

The reaction doesn’t last a couple of minute either, the reaction can last up to an hour.

It’s why our windows are often open in the middle of the winter.  As soon as I begin to cook with an onion, I open the window.  It usually softens the reaction.  I also try to have peppermint something with me at all times.  Why?

Well – I can control a lot of the environments we enter, but I cannot control smell.  I cannot control another person’s perfume or deodorant, I cannot control the scent of the candles in another person’s home, I cannot control cleaning scents.  So, I carry peppermint – peppermint patties, peppermint candy, peppermint gum – all things minty.

images-5

One of the things that makes me giggle about writing this blog is when I research what the experts write/say about how to help our children.  Often, I’ve been using their ‘profound’ strategies all along, not really knowing I was doing anything special.  I think it’s just more thing about parenting on the spectrum, we don’t spend a lot of time wondering about the ‘why’ – we spend much more time simply finding solutions to the struggle.  Example?  

“You can “pre-treat” receptors with more tolerable odors that alter the perception of incoming smells.” (http://sensorysmarts.com/AADMay11.pdf)

No kidding?!?!  It’s not rocket science or brain surgery.  If smells bother your child – open the window.  If smells bother your child give them a peppermint.  We’re lucky because Tucker loves peppermint – but he doesn’t necessarily know why I always have something pepperminty with me.  If I smell a smell I immediately hand him something minty – and I try to be proactive,  get him chewing before he has a chance to react to the smell.

It not only tastes good, but the taste is so strong it’s often the only thing he can smell. While taste and smell are separate ‘senses’  with their own organs, they are intimately intertwined. The awesome side benefit?  Well, I’m always looking for more natural remedies for whatever ails us – and peppermint is just that!

Remember Day #97 – The Trouble With…Um…Going? Yes, peppermint has been proved to relieve issues related to ‘going.’  In fact peppermint is a more natural remedy for these common problems (from:  http://articles.mercola.com/sites/articles/archive/2013/10/14/peppermint-health-benefits.aspx)

  • Irritable Bowel Syndrome
  •  Colonic Spasm and Gas
  • Gastric Emptying Disorders
  • Functional Dyspepsia (Upset Stomach and Indigestion)
  • Infantile Colic
  •  Breastfeeding-Associated Nipple Pain and Damage
  • Tuberculosis
  • Allergic Rhinitis (Hay Fever)
  •  Shingles-Associated Pain
  •  Memory Problems
  • Chemotherapy-Induced Nausea
  • Prostate Cancer
  •  Radiation Damage
  • Herpes Simplex Virus Type 1
  • Dental Cavities and Bad Breath
  • Respiratory Benefits
  • Headaches
  • Stress
  • Hair and Skin
  • Asthma
  • Muscle Pain

2 Birds, One Stone

Smelling and Going.

Checklist from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:

_x_ reacts negatively to, or dislikes smells which do not usually bother, or get noticed, by other people
_x_ tells other people (or talks about) how bad or funny they smell
_x_ refuses to eat certain foods because of their smell
_x_ offended and/or nauseated by bathroom odors or personal hygiene smells
_x_ bothered/irritated by smell of perfume or cologne
_x_ bothered by household or cooking smells
_x_ may refuse to play at someone’s house because of the way it smells
__ decides whether he/she likes someone or some place by the way it smells

Day #108 – Christmas, Cheeseburgers, and Jeans

A friend recently said to me, “You just have to make him wear jeans a couple of times a week if you want him to wear jeans.”  Well, it should be just that easy…I let it go and then laughed, hysterically.  The challenges of dressing a kiddo on the spectrum can be…well…intense. The thing is – they have enough trouble just getting their brain to engage and function that we (parents) try to remove anything that will stand in the way.

Jeans?  Yeah…they’ll do just that, stand in the way.  They feel funny:  the seams, the waistband, the fabric.  If Tucker’s body doesn’t feel right, he can’t let it go.  Not because he’s being naughty or stubborn, but because his brain WILL NOT ALLOW him to let it go.

I liken it to a fly when you’re trying to sleep.

You know that experience?  You’re laying down for a nap in mid-July. You basking in the sunshine coming through the window. It feels perfect…refreshing and relaxing from a week of work.  You close your eyes and are on the brink of sleepy time when you hear it…the fateful buzzing.  You keep your eyes closed and try to lay still, willing the fly to go the other way.  But it doesn’t, it just gets closer – buzzing around your face. Then, it lands.

You shoo it away, convinced that it will learn its lesson.  Then, remember the window you are sleeping by?  The window that provides the natural warmth?  Yeah, the little bugger starts hitting the screen. Even though you know it’s not that noisy, it feels like the loudest noise in the world – because ALL YOU WANT TO DO IS TAKE A LITTLE, BITTY nap.

Finally, it stops.  Peace, finally some rest. Then the fly begins again.  You swat.  It circles.  You swat.  It circles. The cycle continues until you get so angry that you get up to get a fly swatter to KILL that annoying creature.  The kill is successful – but then you realize that no sleep will be had because of your adrenaline-filled fly-killing rage.

Well, that’s how I liken our jeans experience.  The jeans?  The fly.

Tucker will stop learning (kill the fly) or take off his pants (just get up from his nap) to avoid the feeling of jeans. I think most folks would prefer that I simply allow him to wear sweats/shorts.

What does this have to do with Christmas?  Well…in talking about Christmas services I said, it would be nice if you could try your jeans (I try this tactic twice a year…Easter and Christmas). He said, “I hate jeans – but it would be nice for Grandma and Grandpa.  Jeans are better than khaki pants.  Can I take the jeans and we stop at a gas station by their church right before and right after?”

Yes.  Yes you can.

So, there you have it…jeans.  Jeans for 90 minutes…but jeans nonetheless!

I even have proof – although he was walking so fast it’s incredibly blurry.  Proof, nonetheless.

photo-5

It reminds me of the holiday season – and how it really is the small things that bring joy.

The 2-cheeseburger bribe brought him joy.

The jeans brought the rest of us joy.

Day #107 – My Grown-Up Christmas Wish

This week I watched one of those sporty shows with my husband. He said to me, “You should be a guest on this show because it takes you 10 seconds to say what it takes those yahoos 25 minutes.”

My grown up Christmas wish in less than 10 seconds.

Less judgement, more love.

That’s it for today…I’ll expand more on another day – but for now, that’s all.

Less judgement, more love.

Day #106 – The Night Before Autism

I try to stay away from the copy/paste option on this blog.  But I MUST share this…this poem was written in 2008 by Cindy Waeltermann, who is the founder of the organization Autism Link.

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Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

Day #105 – Eye of the Storm

Right or wrong – when autism bears down on your family – it often feels like a hurricane; chaos, unplanned turns, and pure upheaval. Tucker is like the eye of our family storm.  Our family works ‘best’ when Tucker is calm and we ‘storm’ around him (often unknowingly) to help his world remain calm and expected.

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A report on Christmas celebrations thus far….

Christmas #1 – Grandma & Grandpa

This past weekend we went to my parents house.  We arrived Saturday early evening and life was good.  We arose Sunday morning and life was good.

We decided to open presents before lunch which meant lunch would be late.  As soon as I realized this I sprang into action preparing a plate of cheese, sausage, and crackers.  He didn’t want to eat – he just wanted to open presents.  Into a corner we went so I could explain to him that dinner would be later than normal.  We would open presents first.  Therefore, ‘ You need to sit and eat this food so that your brain doesn’t get angry.  It’s not you, it’s your brain.”  Then his amazing aunt, Deb, sat down and invited him to sit beside her to share some snacks.  I often wonder if people know how much they are really helping or if it’s just the immense amount of love they have for him.  At that moment, she had NO idea how much she helped (or she did…she’s pretty amazing like that).

Eye of the Storm.

Tucker sat in the doorway (as usual) to allow him space and a ‘quick exit’ if need be.  We surround him – all knowing that the spot is non-negotiable.

Eye of the Storm.

We finished presents and he was ready to eat.  Now.  He couldn’t – because the fillets weren’t finished on the grill.  So, I coaxed him with another soda (knowing I would pay for that later).

Eye of the Storm.

We ate and it was lovely.

We visited and it was lovely.

We lounged and it was lovely.

My husband comes to me and whispers in my ear, “Tucker has wrapped himself in a blanket and is rolling on the floor.  We need to go.  The storm is moving in.”

I look for him – sure enough, he is scooting around the floor with the blanket wrapped tightly around him – a 6’1″, 200 lb. caterpillar.  He wasn’t kidding – we’re on the brink of meltdown, flirting with disaster.

He and I begin packing furiously – my mom and dad get a bit sad because they know we are leaving.  We’d love to stay longer but he  – well….

Eye of the Storm.

The drive home went well – and on the way home all I could think about was how lucky we are.  How lucky we are to have a family that has worked at ‘getting it.’  I know it hasn’t always been easy – we’ve all come a long way, together.  I’m reminded of a decorative plate that my mom has resting on a shelf….

Christmas #2 – Our Own

This morning we did our own family Christmas – we made it through, fairly unscathed. Lunch came.  Then my husband looked at me as I was putting finishing touches on the Baked Alaska.  “We’ve got to get him down after lunch, his eyebrows are this color.” He pointed at the sour cream container lid…bright red.

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Only it’s not an unknown condition.  We both know exactly what is going to happen if we don’t make some moves. Not only for the rest of today…but tomorrow and the next day.  We currently have five children in our house – ages 17-10…how in the world is this going to work?  This is how…these children that live in this house?  They love him too and they know exactly how AND why to gather around him.  So when I announced, “Naps for everyone this afternoon because of all the activity we have over the next three days.”

The 42-year-old said, “Awesome.  I hope I can get you [as in me] to lay down too.”

The 17-year-old said, “YES!!!.”  He does nap, though…

The 15-year-old said, “I can’t wait.”  She never naps.

The other 12-year-old said, “Absolutely.”  She rarely naps.

The ten-year old said, “My bed or yours, mom?”

I went downstairs to tuck him in and take away any bootleg electronics. Tucker is asleep, right now.  We’re now going on 1 1/2 hours, in the meantime…

The 42-year-old left to get some supplies for the Red Velvet cake I’m making tomorrow.

The 17-year-old went off to a friend’s house for his own Secret Santa Party.

The 15 and other 12-year-old are with the 42-year-old getting supplies.

The ten-year old is in my bed – with the iPad on silent.

I am writing.

No one is napping, moving, or making noise – the house is in the eye of the storm.

I think back to that plate on my mom’s counter.  On that plate? The famous Vivian Greene quote, “Life’s not about waiting for the storm to pass…It’s about Learning To Dance In The Rain.”

That’s what we all do – we don’t wait for the storm.  Instead, we choose to dance. We dance in the midst of the storm to keep him in the eye of the storm.

Day #104 – Sad Puppies

It’s one of my new favorite sayings…because no one likes sad puppies.  I know, I should be all happy and stuff during the holidays.  I generally am – but because of this blog I’ve been forced to be more reflective.

On lots of stuff…

But lately – about my sweet Stelli.  Tucker’s sister, Estelle.

I’ve already commented some about her – but I’ve been in a bit of a funk lately.

She’s never been to a large amusement park – because it would be completely overwhelming to him.

She’s never really been on vacation for more than 2 days – because the upheaval in schedule is so difficult for him.

She’s never been to a concert – because I know the lights, the noise, the uncertainty of it all would cause a meltdown for him.

Okay  – lots of us haven’t been to those things.  But, how about these?

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What are those pictures from?  Christmas Greetings on Main Street.  It’s just part of the celebration in our little town in Iowa.  Why do these pictures make me sad?  I have to make choices that I don’t like to make.

  1. Do I not go at all because I know it will be really overwhelming for Tucker?
  2. Do I go and leave Tucker at home (but take Estelle) leading him to feel alienated even more than he already is?
  3. Take him and cross my fingers that he does okay (the likelihood of that is minimal)?

I didn’t go.  I also didn’t tell her about it – because she would give me sad puppy eyes. Guilt, guilt, guilt…

Last week was Stelli’s Winter Chorus program. Always a struggle.  SO many feelings…

  • I feel frustrated because he can’t just sit.
  • I feel embarrassed because my 7th grader ends up sitting on the floor in back with his coat over his head.
  • I feel sad because I end up watching him to make sure he’s okay rather than keeping my full attention on his sister.
  • I feel angry because I have to deal with any of it.
  • I feel anxious because I just want it all to go well.
  • I feel ashamed because other people stare at him.
  • I feel relieved when it’s over  – not because she did a great job, but because it’s over and we get to go home.

So, it just makes me feel…well…like this.

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It does…it’s the only face that somehow combines frustration, embarrassment, sadness, anger, anxiousness, relief, and being ashamed – like I just chewed up my owner’s favorite stuffed animal.

I hate it – mostly because I’m a choose your attitude type of person, but sometimes we just can’t.  Sometimes it’s just damn frustrating and awful that I have to make these choices.  I’m just sad that I can’t make it all work. I know it’s life and bla bla bla…but it doesn’t change the continued guilt and irritation I feel.

Last night at a family Christmas gathering I watched as my three bonus children (some say step, I say bonus) joked around and loved on each other. I looked over at Stelli and she had those eyes…longing, sad puppies.

It was at that moment that I realized something. She and Tucker have a great relationship…they rarely fight and always stick up for each other.  But she doesn’t get to have ‘that’ with her brother. The conversation, the gentle ribbing, the thing that so many siblings have. She has a sibling…but doesn’t get that.

I also know that she has developed the kindness, compassion, and understanding that few 10 year olds have…but she [probably] won’t ever have that.

At least a couple times a year I ask her to write about how she’s feeling.  She’s also a writer and last year she arrived home with this letter.  The letter wasn’t to me – but to all of us.  Regardless, I read it and then cried monumental tears.  (Estelle, Age 9):

My brother, Tucker, has autism. It can get a little out of control sometimes though. Once you have it, you need to learn to keep it. He gets frustrated with me. But I know that he is just having a little meltdown. He doesn’t have horrible autism, just it can be hard to have a older brother that misbehaves. It’s really not him. If you dig down, he can be a sweetheart. But on the other side, he is big and strong. He knows how to handle it. It’s just once and awhile he loses his temper. That’s normal to me. I really don’t care. But if he hurts himself, I try to stay away. I’ve only gotten hurt at least twice. I forgive him because I feel like he cannot control his action. It’s never like I just walk away. I try to do something about it. I’m only being bossy because I know that thing will make him angry. He doesn’t understand yet. He also think I don’t know the meaning of life. That hurt me a lot.

I also laughed through those tears…I would really like to know the meaning of life.  It’s a question I’ve been wondering for about 38 years.

So, yesterday when I said one of the greatest gifts you can give is to support the neurotypical sibling – this is why.  No one likes sad puppies – and really, most of all – this may be where we need the most support.

I can handle my own yuck.

I can handle his yuck.

What I have trouble handling?

The yuck I can’t really control – and yet I cause – the yuck this thing causes.

That is real hurt – real sad puppies.