LUKE – I AM YOUR FATHER

While I was still pregnant with Luke and considering names for the perfect, little boy that would soon be joining us, I remember distinctly the moment that the name Luke popped into my head.  I was stopped at a stop sign in our tiny little town on my way home from grocery shopping.  Suddenly, I just heard it in my head, “Luke.”  That is a very nice name and I think it meets all my criteria.

  1. I have never dated a Luke.
  2. It is short.
  3. It doesn’t rhyme with any derogatory words.
  4. It will not be mispronounced.
  5. It is common enough to not be weird, but not so common that three kids turn around every time I call his name.

I took the idea home to my husband.  Who immediately agreed.  The name had also come to him.  Of course, he had a much more practical reason for liking the name.  “After all,” he said, “I have always wanted to say, ‘Luke, I am your father!'”

And so it was that Luke came to be Luke.  We knew Luke was perfect when he was born.  His life was a miracle. We loved every piece of his 5 pound, 11 ounce body.  We watched him grow and waited eagerly to introduce him to Star Wars so he could meet the hero that inspired his name.  As time went on, though, we began to realize that our perfect son may not ever understand the humor in his Daddy’s words, “Luke, I am your father.”

The unfortunate fact is that the movie Star Wars is notably lacking tractors of any kind.  Now if our hero, Luke Skywalker, were to fly through space in a John Deere tractor battling evil farmer clones in combines, Luke might be convinced to watch.  However, since Luke prefers harvesters to jet fighters and perfectly hitched fertilizer sprayers to witty robots, we reconciled ourselves to the hopelessness of introducing our Luke to THE Luke.  Until today.

Unlike Luke, Thomas loves all things Star Wars, so he was elated when I offered to let him watch one of the DVDs on my laptop today.  Not long after the movie began, Luke bounded into the room, and I thought, “Well, that was fun while it lasted,” knowing the battle that would follow.

However, instead of pushing away his loud, aggressive, older brother, Thomas excitedly invited Luke to join him.  “Luke, you wanna watch a show with me?   The hero is Luke – just like you!  C’mon!”

20170409_144259Luke happily plopped himself next to his brother.  They hugged for a few minutes and then resumed the movie.  Luke lost interest after a few minutes and has been in and out of the room many times, but each time he returns, he is welcomed by his little brother who pauses Star Wars long enough to love on Luke.

Who knows, with enough loving invitations, maybe Luke will understand the story someday.  After all, “The force is strong with this one!”

Left or Right?

Left or right?  I sat at the intersection pondering the lasting consequences this decision would have.

It was December 2015 – a particularly harrowing month to be living with Luke.  Luke does not just enjoy summer, he requires it to be happy.  He needs the movement outside to burn off energy and soak up happy emotions.  By December, with both exercise and vitamin D limited and Christmas chaos and candy abundant, Luke had become completely unmanageable and violent.  One day, Little A – then three and still very small for her age – tripped as she bopped along with the kids coming in from school.  Without warning, Luke was at her side, stomping on her head and laughing uncontrollably.  He probably only landed one or two hits before my teenage boys saved her, one tackling Luke, the other blocking her from the blows, but the image was seared into my brain.  My little girl suffering under the feet of her much larger brother who mindlessly acted on every passing impulse.  He was growing so quickly; how would I ever protect her when I no longer had the older boys to intervene – when his body looks like theirs? Six feet and 200 pounds of uncontrolled emotion was a fear that I just could not imagine.

Life at school was not much better.  Although we had hit the jackpot of loving talent in a new behavior interventionist (BI), Erin, the special education teacher simply did not have the temperament to handle my volatile boy.  Whenever Erin was gone, his behaviors with the teacher escalated.  He knew how to push her buttons and did so freely.  Breaking away and running from her, pushing and hurting other students, intentionally ripping breaking his classmates’ eyeglasses, dumping and breaking school supplies, smashing the box that holds the fire extinguisher.  After enduring months of his abuse, the teacher finally broke.  She just could not work with Luke any more.

I am not sure the specific event that led to the drive I was on with my Luke.  I know it had been another rough day at school and he would.   not.   stop. screeching – the fingernails-on-a-chalkboard screech that just grates on sanity.  In desperation, I loaded him into the van; it was the only activity that had ever reliably calmed him.  We drove and drove and drove.  Slowly the screeching faded into wimpering and then to blessed silence.  As I pondered our situation, I became completely and helplessly overwhelmed.  Endless drives day after day simply could not continue, but it was our only calm from the storm.  Suddenly, a thought came to me that promised to protect the people I loved and end the endless frustration. . . .

I have struggled with depression, probably, since I was a teenager.  I have had suicidal thoughts for a good part of my life, but these thoughts were always outside the boundary of my reality.  They would pop up unexpectedly without provocation, but they were not my reality.  I am a happy person; I would not ever DO the things that just popped into my head.  This day was different though.  I suddenly had a moment of complete clarity – a solution to this unsolvable problem.  If he only wanted to drive, then we would drive.  Just up the highway from our house the road rounds a corner that is precariously close to a rocky ravine.  As a kid, I was terrified of rounding that corner, but on this day, it seemed like a small ray of light.  It would be so easy to just keep straight.  We would leave this problem behind us, together.

It was in this frame of mind that I stopped at the intersection near home.  With puffy eyes and a broken heart, I pondered my direction.  Left or right? Left would take us to a permanent solution.  Right would take me back home to endure more of the never ending screeching and violent, destructive meltdowns.  I turned right; that option would still be there on another day; it would always be a choice I could make later.  I will make it through this night first.

I was scared: scared that I might actually do something that would hurt so many people I love;  scared that I had moved the ever-present suicidal thoughts from the buried corners of my mind to the forefront of conscious consideration.  My rational brain knew it was stupid, but my emotional brain just kept reliving the option.  Was I going crazy?  How could I trust myself to take care of Luke when I had actually considered this awful thing?

While dropping Luke off at school the next day, Erin and I were trouble shooting possible triggers and solutions for the behaviors we were seeing.  Next thing I know, words were tumbling out as I recounted the previous evening’s experience.  I am not sure what I expected – perhaps a horrified gasp or a stunned reprimand.  What I didn’t expect was her calm response, “Shanna, I would think you were crazy if you didn’t have thoughts like this.  Look at what you are going through.”
Erin’s background is in social work; she has helped truly troubled souls move to a better place.  She has more love for lost souls than any person I have ever known.  She has known and loved people who have actually followed through on these haunting thoughts.  Her reassurance that I was not a failure or a danger to my son buoyed my spirit and gave me hope that this was just a passing valley in a vast and beautiful landscape that was unfolding.  It was a reminder that we are allowed to suffer in order to more fully experience joy.  Yes, Luke’s low times still bring me great sorrow and concern, but I cling to the knowledge that my boy will be back; other days will be brighter, and my view will be all the more beautiful for having known the darkness.
Left or right? I chose right.

 

Birthday Boy

Birthdays.  As kids we look forward to them and countdown the days until we are able to say we are really one year older.  We look forward to the cake, the candles, the ice cream, the people, the party,  and most of all, the presents!  Luke turned 10 this week, but his interest in any of the typical joys of birthday celebration are anything but typical.  We celebrated Luke’s special day at my parent’s home.  This has become our norm whenever we have get togethers of any significant size since our kitchen table, chairs, and any other form of seating were, “Luked,” long ago.  We have simply given up replacing such items and have opted for a small, folding table and a couple of sturdy thrift store benches for the rare instances that the family actually sits down to eat together.

The struggle with birthdays for Luke is that the number of people who love him and want to celebrate with him greatly exceeds the number of people he can tolerate in one room.  The chaos and chatter is simply overwhelming and sent him quickly to the basement, away from the party.  His pain was so clearly evident as the tears welled up in his wide, sad eyes.  He choked them back, just like any other ten year-old boy would do and clung to my arm while I tried to coax a bite or two of spaghetti into him.  I knew what was wrong, but I ask him anyway, ever hoping that he will miraculously start verbalizing his feelings.

“Oh, Luke, I want you to be happy on your birthday.  What’s the matter?”

“Do you want to work for a tractor?”

“Of course, you want a tractor!  It’s your birthday, and one of your presents has a tractor in it.  Should we go find it?”

“Yes!”

We interrupted the family’s dinner and quickly lit candles and blew them out.  Luke dutifully sang to himself through the tears.  He blew out his candles and ripped open the first gift he was handed.  Clothes.  Toss them aside.  Open the next gift: clothes. Toss them aside.  Finally, the tractor.  A remote controlled excavator that I knew he would love.  And he did.  The new toy bought us an hour or so to visit with family and then head for home to deliver medicine and tuck the birthday boy in.

The birthday boy, however, had endured an entire day of changed up routines and over stimulation.  He completely lost it in an epic meltdown of kicking, screaming and self-injury.  None of my typical soothing techniques were up to the task of calming my raging son.  In desperation, I broke out a gift I had tucked away for him for Christmas – a handheld electric massage tool.  I tried to massage his back – usually his favorite – but not tonight.  Head? No. Feet? No.  Finally, he grabbed my hand and placed it on his tummy.   We crawled into a sort of fort under the blanket on my bed massaged his bare little belly.  Slowly the tears were replaced by smiles and cuddles.  In the quiet stillness of our sleepy house, Luke finally had his happy birthday.  No noise.  No light. Just a tummy massage and a mamma’s attention all to himself.

“I love you, sweet boy,” I whispered to him.

He didn’t respond, but his little hand squeezed mine just a little tighter.

No words necessary.

 

 

Blowfish Face

It is commonly believed that the sense of humor is a casualty of autism; that somehow the ability to understand humor dies with the ability to understand or use language.  I do not believe this.  Humor is a highly personalized sense; what makes me giggle often makes my own mamma roll her eyes.  And so it is with my own children, and especially with my Luke.  It is not uncommon for him to break into uncontrollable laughter at what seems to be a completely normal situation.  Perhaps something he sees triggers a memory that I am not privileged to share, or maybe there really is something funny about that field of freshly plowed dirt he stares at through the window of our passing car.  Either way, Luke enjoys his sense of humor, and it is a beautiful thing to witness.

Most recently, Luke has discovered the joy of the blowfish face.  That’s not so different; I mean, who doesn’t enjoy a good blowfish face from time to time?  Luke, however, has taken it from a momentary exchange of goofiness to a method of connecting with the people around him.  He has learned, through lots and lots of testing, that when a typical person is confronted with a blowfish face, it is virtually impossible not to meet that with an equally silly, if not down right ridiculous, blowfish face.

Case and point:

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My amazing husband is met at the door every evening by blowfish face.  The exchange that follows is one that the casual observer would discount as a playful father-son moment.  However, as I watched last night’s interaction, I saw so much more.  I saw my boy connecting with his dad on a most intimate and loving level.  I saw him share his desire to communicate as they exchanged silly blowfish faces.  I saw them sharing a moment that was funny to both the giver and the receiver and an understanding that we all enjoyed the same happy emotion.

 

 

 

 

 

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In that moment, we were all on the same playing field, speaking the same language, and reacting with the same giggles.  I imagined Luke thinking, “Look at me; I am not so very different.  You and I do the same face, and we both laugh.  I am yours and you are mine.  We are connected by this silly face that we both share.”

 

Blowfish face can quickly get out of hand, however.  The game is so completely stimulating that Luke simply cannot contain his emotions and they overflow into self-stimulatory behavior (commonly know as, “stims,” in the autism world).    He runs and prances about while biting his finger on one hand and pounding on his leg with the other.  It is a reaction that has become commonplace to those who know him best and is brought on by any sudden change of emotion – both positive and negative.  Once he bites, the game must end, but the joy of the moment becomes part of Luke’s world – maybe a moment that will bring the back seat giggles at passing fields.

So, if you see us out and about and are greeted by an up close and personal blowfish face, please understand that this is Luke’s own unique sense of humor seeking to connect with you and reciprocate with an equally impressive blowfish face of your own.

Freedom to Move

Sometimes I just want to move. Move freely – without interruption – from point A to point B.  All day long, I find myself strategically planning my movements.  How can I get from the kitchen to the bathroom without collecting a toddler taking a ride on my feet, an eight year-old clinging to my shirt, and a Luke tugging on my right index finger, directing me to his latest hitching problem.  Managing movement is a problem for me in every way.

Luke, on the other hand, has no problem moving freely.  After teaching himself to ride a bike, I was chasing my 4 year-old dare devil through the neighborhood, down hills and over bumps that I thought would surely buck him off.  They never did, and he relished the freedom to quickly move from our house to Grandma & Grandpa’s two houses down the street.

While I enjoy riding with Luke, we never went far as I was constantly on guard.  His fascination with hitches literally drives him to any vehicle that has a hitch.  Our ability to really ride freely was limited at best.

Enter our hero, Grandpa.  He had the inspiration to design a bike that could be hitched to a lead bike – allowing Luke to pedal and enjoy the movement of a bike ride while the driver in front controls the direction. After many hours of research on what designs are already available and what our specific needs were, he designed a hitch that has been life chaging for us.  The hitch attaches to the seat of the lead bike and the front wheel axles of an adult sized trike.  The hitch can move side to side, up and down, and can rotate, so if one bike is tipped on its side, the other bike doesn’t tip over.

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Luke, with my brother, on the first of many, many bike rides this summer.  He has lost 13 lbs. this summer, thanks largely to all of the biking he has done.

We ride where ever we want to go now.  We can ride to the playground, park, or church.  Usually, though, we just ride wherever a whim takes us – up and down the streets of town, safely enjoying the freedom of undeviated movement.  Now, if only I could get to the bathroom so easily . . .

Gizmo’s a Go!

It’s a go!  After many months of contemplation and debate, we have committed to a service dog for Luke.  Gizmo is an English Cream Golden Retriever. Whenever I talk to people about our new adventure, I get lots of questions that are difficult to answer on the spot, so here I will try my best to answer some of them.

  • Why did you choose this dog over others?
    • Gizmo has been through several tests to determine his fit as an autism service dog.  His trainer specifically suggested him because of his forgiving nature.  When he is pestered, he doesn’t nip or retaliate.  This is good because the likelihood of being pestered at our house is like 110%.
    • We debated between Gizmo and a German Shepherd.  We liked the size and loyalty of the Shepherd for Luke’s safety, but decided that a little smaller dog would be easier to handle in public and at home.  We also loved the soft coat of the retriever over the Shepherd.
  • What will Gizmo do for Luke?
    • First and foremost, he will be a constant companion and friend for Luke.  Many of Luke’s destructive behaviors occur when he is bored.  With a friend to offer a constant distraction, we hope that he will be less interested in creating toy boxes by busting holes in our walls.
    • Gizmo will sleep with Luke in his bedroom in his own bed.  Right now, Luke is sleeping with me.  He insists on full body contact all night, so we play crazy amounts of bed tag all night long.  Hopefully Gizmo will like to snuggle up with the little bed hog all night long.
    • He will alert us next time Luke lights the toaster, microwave, or oven on fire.
    • When we go out in public, Luke will be tethered to Gizmo, and Gizmo will be trained to sit and provide resistance when Luke tries to run.
    • Gizmo will stick with Luke and bark when I am looking for Luke.  Although Luke is generally good about staying on our property now, he does wander off to the raspberry patch or rides his bike down the driveway where I can’t see him.  We have daily frantic searches for him because he does not respond when I call for him.
  • Has Luke met Gizmo already, and does he like him?
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    As you can see, Gizmo is quite a bit more interested in Luke than Luke is in Gizmo, but hopefully that will all change over time.
    • Yes; Luke has met Gizmo.  Right now, he is fairly indifferent to him as I would expect him to be.  He will pet him when he is asked to, but he certainly does not go out of his way to interact with him.  Bonding definitely needs work.
  • How long does it take to train a service dog?
    • Gizmo’s trainer thinks it will be 6-8 months before we bring him home to live with us.
  • Why does training take so long?
    • It is not only the dog that needs to be trained.  I will be going through weekly training with Gizmo and his trainer to teach me how to handle him and to teach him to respond to my commands.  I am a complete novice in dog ownership, so training me will likely be as hard as training Gizmo.
    • Once we have both been fully trained, we both have to pass tests in order for Gizmo to become a certified service dog that can attend school, church, restaurants  and other public places with him legally.  These tests will demonstrate his ability to obey and behave appropriately and my ability to control him.
  • Will Gizmo go to school with Luke?
    • Yes.  The trainer will attend school with Gizmo and Luke and train Gizmo to take commands from his behavioral interventionist at school.  Hopefully, Gizmo’s presence will help Luke to assimilate into the classroom without causing the frequent disruptions that are problematic right now.
  • What made you decide to get a service dog now?
    • The timing just seems right.  Right now, Luke is receiving emergency support through Medicaid to pay for extra help to come into our home because his behaviors were so destructive, we were worried about the safety of our other children.  The extra help will not always be available, and, if we can get Gizmo trained while I have more help, hopefully he can help ease the transition back to the standard, smaller budget.
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    Just a sampling of the loads and loads of berries we (and my brothers and sisters and parent) have picked. We are so grateful for their help and for the many who have helped us earn the money to pay for Gizmo!

    How are you paying for all this?

    • Our friends and family have been extremely generous in helping us to pay for Gizmo and his training.  We have been selling raspberries and were blessed with a plentiful crop this year and many, many generous donations have been made in exchange for our raspberries.  We are planning to also sell fresh apple cider and apples later in the summer.

 

  • Have you considered setting up a Go Fund Me account?
    • Yes, we have considered it; however, we really want to work for as much of what we get as possible.  It has been so fun watch T Man pick berries with me.  He holds up a large red, ripe raspberry  and looks at it long and hard.  Then, I hear him whisper to himself, “Berry or dog, berry or dog? . . . . . . . . dog.”  as he throws the berry into the bucket.  So far, it has been a great lesson in self denial and sacrificing a little now for something better later.  I know it’s just a small thing, but it is an important life lesson.
    • This has been the single most humbling event of my life.  I absolutely hate asking for money or even selling things to my family and friends.  It’s not like we will die if we don’t get a service dog, and so many people need more help than we do.  That is where the idea to sell our produce started.  I was out picking cherries and pondering and praying about how we save the money we needed quickly.  What do we have in abundance that we could offer without just asking for money?  Our produce was the obvious answer as we always have an abundance, and our community has been so very good to us.  Every gallon picked has been quickly sold, and many have given so much more than the value of the berries.  We are truly blessed by the wonderful people around us!

An Intelligent Brand of Stupid

“Now! NOW!”  The urgent call ripped me from sleep and I took off toward the kitchen stumbling over the laundry basket of clothes as I rounded the corner praying, “Please, not another fire.”

Fire was our Sunday morning activity two weeks ago.  Luke and Little A were hanging out in my bed, Luke watching tractor videos on YouTube and Little A fussing because Luke kept displacing her and snuggling up to me.  His mischievous smile and sudden bolt from the bedroom should have been my tip off to follow him immediately rather than sleepily giving my bed a thorough pat down in search of my phone.  I texted hubby requesting backup then walked out of the room to see what Luke had found to entertain himself.

My first thought as I opened the door was, “Ah crud; he’s melted something then thrown my hot curling iron in the toilet again.”

Nope.  Curling iron was undisturbed. I heard Luke’s voice, coming toward me, “Is it a fire?” he asked innocently.  The flames were already brushing the ceiling and heavy black smoke billowed toward me.  On the bar in the center of the kitchen was the toaster, completely engulfed.  My mind raced as I considered my options.  Electrical fire; what do I do?  Is it safe to throw water on it?  I think so; no gas is involved.  Just a little cup at first to make sure.  I tentatively threw the water at the fire as I hollered at the top of my lungs with all the urgency I could muster.  I hadn’t blown up with that first cup, so I started dumping cups full of water on the flames, wondering where the heck my backup was.  The kids all started filing upstairs, big ones getting the little ones outside where the air was clear.  Finally, hubby appeared.  He grabbed a towel, wet it and threw it over the flames, extinguishing it completely.

It was all over in a matter of minutes.  We opened windows and doors to begin funnel breathable air back into the house.   I soaked my burned arm in cold water as hubby investigated the cause of the fire, although we both had a fairly good idea what had happened.  Sure enough, in the bottom of the burned out toaster were the charcoal remains of a train from our collection of Thomas the train collection and a metal race car.  The damage was relatively minimal.  Several 4-5 inch boils and holes in the laminate counter top and a smoke stained ceiling.  A heavy layer of soot caked anything that was out in the kitchen or living room, and we were blowing black boogers from our noses for a couple of hours.  I had minor blisters on my arm, hands and feet, but we were lucky, and I collapsed and sobbed at the thought of what could have been.

Now, here I was again waking to another untold emergency with panic in my heart.  I ran to the kitchen, but saw no evidence of foul play.  Then followed Luke’s cries to his bedroom where I immediately knew what he had done.  There, on the floor in front of the electrical outlet, was a pair of blackened scissors, and Luke was armed with a kitchen knife ready to go in for another battle.  I wrestled the knife from him and picked up the scissors.  He recoiled in fear of the scissors that had shocked him.

“What the heck, Luke?!”

We keep the breaker to his bedroom flipped off since the wiring is exposed after he tore the sheet rock off of all of the inner walls.  However, he has recently figured out how to flip it back on when we want to use the television in the living room.  He must have flipped it on so he could see to operate on his plugin patient.  And even after his shock, he was ready to go back in for the kill, blaming the scissors, not the outlet for his pain.

This evening, hubby remarked, “I wonder how many lives that boy has.”

“I don’t know. He’s used up three just this month.”

My boy must have an full army of guardian angels looking out for him.  His intelligent brand of stupidity is enough to wear out even the most angelic of guardians.