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!”

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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.

Folks Who Get It

“Let go of my cart!  I said, LET GO!”  I heard the demand, but took several moments to register that it was aimed at my boy.  Luke sat in the back of my cart happily smashing her cart into ours as she vainly tried to pass us in the grocery store aisle.  I quickly moved his hand away, freeing her cart, as I registered the icy glare that said more than words ever could.

“I’m sorry; he’s autistic.  He doesn’t understand.” I offered up feebly.  The assaulted customer passed by like a cold wind.  My heart sank.

Behind her approached another shopper, momentarily distracted by jars of spaghetti sauce.  Luke saw his opportunity and lunged for her cart.  “You want my cart too, huh?” The second victim asked him playfully.  She squeezed my arm as she maneuvered past us.  “I have an autistic niece.  I get it.”

I have been the beneficiary of many simple acts of kindness from random strangers who “get it.”  Luke’s autism greatly affects his ability to control impulses and emotions, but these kind people see that Luke’s behavior is not an intentionally mean act directed at them, but the uncontrollable impulse of an autistic child.  They see that what looks like the nasty tantrum of a spoiled child is actually an autistic meltdown, and they know that once he is in a meltdown, no amount of parental discipline will change this behavior because this is not a behavior that he can control.

During what should have been a quick trip to Target for emergency diapers, Luke spotted an end cap of Oreo cookies, and we were done for.  Anxiety in the check-out line progressed to a full-on meltdown as we moved toward the door – minus the Oreos.  In the back of the red, plastic cart, Luke hit and kicked, screeched inconsolably, and banged his head over and over.  Considering both his safety and mine, I decided it would be best to let him cycle through the meltdown there in the cart rather than trying to remove his 90-pound flailing body.  Customers passing by shot sympathetic glances my way.  Several stopped to see if they could help.  An older cowboy suggested, “That boy could use a dose of good, old-fashioned discipline.”  Another gentleman walked by and slipped a Snickers bar into my hand.

“Thank you, but he can’t have candy.” I responded, thinking his intent was to bribe my boy out of his tantrum.

“You misunderstand,” he replied.  “This is for you.  It’s from another mom who just checked out.  She asked me to give it to you; thought you deserved it after going through this.”

Yes, some folks just get it.  They know that I am embarrassed and frustrated by my inability to control my son, but that I love him unconditionally.  They know that behind the mischief and misdeeds is a sweet, kind boy who wants to be loved and treated just like any other kid.  They know there is more to Luke than his autism shows.

The Kindness of Children

 


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Friendship – it seems so simple that we generally don’t even consider the skills necessary to make and keep friends.  We all want our children to have friends and feel accepted by society, but how will Luke ever make friends, let alone keep them, when he cannot control his violent impulses?  In just the last month, he has snatched and broken the glasses of two of his schoolmates.  When he gets over stimulated, he barrels over anything in his pathway, leaving a trail of broken objects and crying children.  I absolutely understand why other children would be hesitant about being friends with such an unpredictable and volatile boy.  When Luke started school, I worried that he would be subjected to bullying by his neurotypical peers, but thankfully, those instances have been exceptionally rare.

Last year, while he was using the restroom, one boy dared another to pull Luke’s pants down, which he did.  Of course, Luke has no understanding of social impropriety, so he could have cared less.  A third boy, however, witnessed the incident and immediately reported it. The school addressed the issue promptly with the boys and their parents.  Since that incident, I have not seen or heard of any cases of bullying or even teasing Luke.  In fact, I am truly in awe of the tender hearts of Luke’s classmates.

11676On Luke’s birthday, his classmates each made him an orange birthday card with sweet messages of love and acceptance.  His teacher had Luke sit on a stool at the front of the class while each child brought him a special birthday wish in the form of a bright orange birthday card.  And these were not just the obligatory, have-a-great-birthday kind of wishes.  Several wrote detailed letters to him. Here are just a few of the sweet messages from his fellow third graders:

Dear Luke:  Thank you for being my friend. I am so happy you are in my class.  I hope that you have fun playing with me because I have fun with you.  I really like it when you smile.  I really like playing with you at P.E. 2015-12-19 17.34.26I had a lot of fun with you on the scooters at P.E. last week.  I really like helping you with your work.  It is really nice to know you.  I hope you have an amazing birthday.  It is a lot of fun playing with you.  I hope you feel welcome in the class because we all love having you in our class.  From, xxx

Dear Luke:  You are the sweetest little boy ever.  You always make me smile when I see you.  You always make my day because you are so so so so so so so sweet.  I sometimes see you at church and you are very reverent.  You are learning a lot of new things and you are smart.  You are really nice and polite to others.  I love when you come into the classroom because I see you and it makes me so so so so so so happy?  And I wish you a happy birthday this year.  I hope your happy being nine.  From xxxx

Happy Birthday Luke!  I hope you have a good time.  Your a cool kid and your funny.  Your a smart kid.  Thank you for coming in our class.

I am simply amazed by how accepting children are of Luke, and I pray with all my heart that they will continue to love Luke despite the ever-widening gap between their development and Luke’s.  Surely, Luke will face rejection as he ages.  I pray that, when that time comes, he will remember these tender years when the children not only accepted his differences, but welcomed him whole-heartedly into their circle of friends.