Let It Go

 

Well, this morning I spent at our local thrift atore looking for a few things to pull together a Luke Skywalker costume for T. Little A came with me, dressed up in her Princess Elsa costume. As fate would have it, “Let it Go” started playing over the speakers, so the sweet patrons of Deseret Industries were treated to an impromtu performance by Elsa herself. She just belted it out down up and down the toy aisle as she hunted for a treasure to bring home. The entire store paused as she sang, and it was just so sweet! When the loud speaker interruped with an announcement over the music, you could hear a collective and disgruntled sigh for interrupting the performance.

After it ended, a lady came up to Ayla to say thank you for brightening her day with that song. She gave her some coins and a princess puzzle that she had picked out to buy for her. As she turned around, I recognized the sweet face of my dear high school friend’s mom. I knew this woman well! She filled me in on my friend and her Grandma who lives up the road from us. Her grandma now has dementia, but is still physically strong so it has been a great challenge for her to give her the care she needs. As she shared the struggle of guilt and pain in deciding how best to care for her mom, I felt the same feelings relative to Luke.

How do you know when you have done enough or when you need to push harder? How much can you ask the family to take? Of course, we did not resolve these issues, but I found strength and love from another person who shares similar struggles. As we left, she hugged me and said, “I’ll pray for you and you pray for me, ok? Whenever we drive by one another’s homes, we can both pray for each other and know that the person in that house is fighting a good fight.” It sounds gloomy and dismal in words, but I needed that connectiom today and the Lord made it happen through our little Princess A singing, “Let It Go.”

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Update on Gizmo – With a Side of Pavlov

Although I knew it was a pipe dream, in a tiny recess of my mind, I will admit that I had visions of Luke and Gizmo becoming instant buddies.  I wanted Gizmo to love Luke immediately and unconditionally.  This has become a strain on the humans in Luke’s life, so why not see if a not-human can accomplish it.  Turns out, however, that dogs don’t like getting dog food shoved in their eyeballs any more than people do.  Weird.

In fact, I am learning that Gizmo is almost as human as humans are.  He gets scared and cowers in the bedroom when Luke starts screeching; he jumps and tries to run away when Luke unexpectedly lays on the horn while loading in the parking lot; and, he will run away if Luke runs at him.  In short, Gizmo is not stupid; he knows when abuse is coming and gets out of the way, but he has never, even once, retaliated when Luke does get him  He is a genuinely good dog with a kind soul.

Although we are still working things out on the home front, bonding arena, Gizmo is helping in the community access battle.  I try to take the two of them somewhere out in the community every day.  Usually this is just to therapy or a quick trip to the convenience store.  Gizmo wears his service vest and Luke has a 6 inch leash tethered to the vest.  Luke’s job is just to hold onto that leash while I hold a second leash attached to a training collar.  Luke has done surprisingly well with it.  Where he used to break away, run to the nearest bag of candy, rip it open with his teeth, and shake it out all over the floor, he now focuses on holding onto Gizmo for me.  It is not perfect yet, but it is much better than it was.

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This is actually not a very good picture of how we normally work the Luke and Gizmo. In fact, this pic was taken just a minute before Gizmo took off down the mountain after a rock that T threw. Can’t take the retriever out of the dog! Because I am usually the picture taker, I don’t have any pictures of us actually out an working the way we typically do.

In training Luke to stay by Gizmo, and Gizmo to listen and respond to me rather than the wild kid attached to the other leash, I walk around the house and community with pockets of treats – right pocket full of dog treats and left pocket full of Luke treats.  Any time the two of them have a positive interaction, I give them both treats.  When Luke does break from the leash, I eat one of his treats.  It is pretty impressive what that kid will do to keep Mom out of his treats!

SIDE NOTE – I quickly learned that this concept of handing out treats for good behavior is actually quite effective training for humans too.  On more than one occasion, I have found myself wandering the house, distributing little bite-size candies for random good behavior.  “Oh, you washed your own dish; good job, have a treat!  You cleaned up that mess? Yay; here’s a treat!  Nice job on your spelling homework; here, have a treat.”  My little human subjects all respond well, although it feels a little odd treating them all like miniature Pavlovian experiments, and the dental hygienist in me cringes every time I throw that mini cavity-creator their way.  END OF SIDE NOTE.

Another hitch in this beautifully concocted training plan we are seeing is that Luke is experiencing a significant uptick in violent tantrums, which we suspect may be the result of too much training with sugary rewards.  His sensory sensitivities have been on a rapid rise since before my classic conditioning experiments began, so I don’t think that is the only factor at work here, but it is one that I need to eliminate.  Now we are on the hunt for reasonable, motivating treats with less potential to wreak havoc with Luke’s behavior problems.  Beef jerky, anyone?

All in all, I would say that I am cautiously optimistic that this whole experiment will be worth the incredible investment in time, money, and emotion.  If my goal for Gizmo were only to have a fantastic pet, that mission would have been accomplished many times over.  We love him to death; he is well-mannered, sweet, potty-trained, and just as much fun as any pet owner would ever want.  He has a ways to go in getting him to really be helpful in the home, but hopefully with enough perseverance, we will get to that point.

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 . . .