We Fart!

In my childhood visions of motherhood, I would come home to a clean house and happy children who would lovingly greet me with joyful hugs and kisses.  Yesterday, I came home and was greeted by Luke, who ran into the kitchen the moment I walked through the door and excitedly declared, “We FART!!”

Why yes, son, we do.  I am so happy that you have learned this exciting new concept.

This is just the latest in a string fun, new summertime discoveries:

After listening to his parents speak in church, he came to the sudden and quite vocal realization that, “We don’t pee in the freezer!”  (And, yes, he did try it.)

20170713_205600If he wants to get Mom’s attention, a sure fail method has always been to sample a variety of nonfood items.  This summer, however, Luke has kicked it up a notch above just rocks, dirt. and dried up manure.   Those are just so old school.  He knows that if you really want a reaction, you have to get creative!   Try some bird poop off the headstones during a visit to the cemetery on Memorial day.  A long, deep swig of teal acrylic paint (dumped into a cup for easier drinking) lacks creativity but sure generates a nice little Mommy tantrum.  Need a little protein?  How about a large, fresh, juicy slug from the raspberry patch? mmmmm!

I can honestly say that my childhood dream did not include having this conversation with my legitimately worried four-year-old daughter at bedtime:

“Are you sure about this, Mom?  Are you sure this toothbrush hasn’t been up Luke’s butt?”

“Yes, I’m sure, darling. I throw those toothbrushes away as soon as he brings them to me to smell.”

Ah, the real-life dreams of motherhood: dreams of those beautiful days when I am greeted only by the innocent and excited declaration that, “We fart!”

 

 

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!”

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.

Ride, Rinse, Repeat

Every summer, Luke seems to develop a new and intense enthusiasm.  Sometimes these are amazing breakthroughs that I think could lead to a future career; other times, I am simply baffled: stumped by the utter lack of predictability that seems to drive his attention.  Last summer, his enthusiasm was pruning shears.  He became quite an adept pruner as he helped me trim up the many apple trees that grace our yard.  Unfortunately, his enthusiasm simply could not be constrained to our overgrown fruit trees.  He needed more, and the possibilities were endless.  He quickly discovered that plastic toys were excellent subjects upon which to practice his art of pruning.  We responded to that move by boxing up his toys and stashing them away in the van that outlived its usefulness as a vehicle and discovered its destiny as the only closet able to withstand Luke’s attempts to break in.  Not to be beaten so easily, Luke upped his game to the radio antenna on our car.

“Oh yeah?” we responded, “We’ll hide those shears on the highest shelves of the garage.  You’ll never be able to reach them.”

Wrong again.

That little monkey scaled the shelves up to the counter top, climbed on top of the garage freezer then up on top of the shelves, retrieved those pruning shears and hopped back down.  Then he did what any logical, clear thinking adventurer would do; he pruned the handlebars off his brother’s scooter, snapped the plastic wheels off his wiggle car and cut the handlebars to his own bike down to size.

We played an eternal game of hide and seek with those pruning shears all summer, but no matter how cleverly hidden, that boys sixth sense for shears helped him sniff them out.  Having demolished his primary mode of self-transportation, we spent most of the summer on long drives and visits to the lake.

This year, I decided to take a risk and bought Luke a second hand bike at a local thrift store to replace his trimmed up version from the previous year.  Bicycles have become the new theme of our summer.  Luke has loved riding bikes since he taught himself how on the neighbor boy’s itty bitty starter bike when he was just four years-old.  Lately, I have braved several early morning rides about town with him.  Whenever we weren’t riding, he was out trying to figure out what new things he could hitch that bike, and everything else with wheels.  His new hitching tool of choice is the C-clamp, a marvelous instrument that can be attached relatively easily to almost any type of vehicle.  And then came what I think I could safely call one of the happiest days of Luke’s life.  Grandpa welded a real, genuine hitch to his bike!  Now he can easily hook any number of yard implements, dustpans and wagons behind him and proudly carry his trailers up and down the driveway.  He has even taken to loading three year-old Little A into the wagon and giving her rides.

Last week’s riding adventure brought out the sense of humor that I am starting to see Luke develop.  While pulling sister in the garden cart, he noticed a puddle created one of the yard sprinklers.  With a mischievous giggle he B-lined for that puddle while the sprinkler was turned away then abruptly stopped just outside the wet edge, leaving poor little-A parked as a prime target for the sprinkler.  She obligingly howled as the cold sprinkler showered her, and Luke was thrilled.  Once the sprinkler shower had passed, he resumed the ride down the driveway and returned just in time for a repeat performance. Then he fell into a rhythm, ride, rinse, and repeat, ride, rinse, and repeat.  His giggle unabashedly more proud with each cycle.

Even Little A seemed to enjoy providing the thrill of a screaming fit for Luke’s entertainment.   Although I shouldn’t encourage the teasing, it makes my heart happy to see him learning to manipulate other people’s emotions and understand that what he does affects the way other people feel.  It is a very basic concept, but that understanding is the very basis of developing the ability to connect with people.  And I find it amazing!

Kumbaya?

“How do you spell, ‘penis’?”

The question posed by this seemingly innocent elementary school student jarred his teacher to attention.  The class had been asked to draw a picture about their lives, and the fact that this was his student’s choice aroused immediate concern and suspicion in the conscientious  teacher.

“Why do you want to spell that word?” he asked, fearing the response.

“Well, you see, I drew a picture of a rainbow and I want to write, ‘happiness,’ under it.  I have the, ‘hap,’ but I need the, ‘penis.'”

This was just one of the many stories shared during a four-day retreat for special needs mamas that I attended last week.  It has been years since I sat up late swapping stories and laughing with friends. I seriously felt like a 13 year-old girl again, and it was beautiful and healing.

By nature, I am a fairly reserved person.  I am not comfortable in large groups of strangers; I have even been known to develop a last minute, “illness,” when I feel pressured to participate in social groups.  I was tempted to back out of this one too, but others had been turned away from the opportunity.  I could not intentionally skip out on it.  Sometimes those nagging feelings of guilt and responsibility really  do save me, and this was one of those times.

I entered the room with an overwhelming sense of trepidation. “Please don’t make me hold hands and sing, ‘Kumbaya,’ with a bunch of strangers,” I silently prayed.  I was one of the last to arrive and had missed several of the introductions already.  The group was busy making Journey Boards – scrapbook pages of themselves and their journeys that landed them here.  As I hurried to catch up, I became overwhelmed by the lives of the women surrounding me, and I immediately realized I had entered a room of sisters, not strangers.  These women had faced and conquered struggles that I cannot even imagine.  Loss of husbands, abusive husbands, children with multiple diagnoses, and multiple children with special needs.  By the time I had my board prepared to share, I felt nothing but pure joy for the life I was blessed to have, and this was only the first hours of a life-changing event.

Over the next four days, our group participated in courses tailored to the significant challenges that come from raising special needs children.  We were taught about working with our schools to develop amazing IEPs (Individualized Education Programs – not plans – see Lana I remembered something :).  A local chiropractor volunteered his time to discuss chiropractic options to treating our special kiddos.  We learned about resources available through Medicaid and other charitable organizations.  Did you know that Idaho Falls has a group that is dedicated to finding bicycles that work for our special needs kids?  Neither did I. Amazing!  And that was just the tip of the iceberg.

We learned about the importance of taking care of ourselves and putting priorities in proper perspective.  Later in the week, a certified ABA therapist provided training on handling many of the challenging behaviors we see every day with our children.  I had more questions answered in these four days than I have in all the years of being Luke’s mommy.  I came home on fire with new ambition and drive to make changes in Luke’s care that will help him develop to his full potential.  More than that, though, I came home with a new network of support, new friends living with parallel challenges, new skills (and no, ladies, painting is not among those skills), and new perspective.

Thankfully, my prayers were answered.  Although we did have one very close call, we were never required to hold hands and sing “Kumbaya.”  I would say, however, that I do have more of a Kumbaya spirit now.  A huge thank you to all of the many, many people and organizations that contributed time, money, and effort to make this possible.  Every one of you contributed to healing this stressed-out, tattered mamma.

 

 

 

Flippin’ Bugers

Mama always told you not to point; pointing is rude.  However, it is a crazy useful skill to have that is notably lacking in many autistic children.  We worked and worked for years to teach Luke how to point with his own finger.  His preference has always been to use my finger to point at pictures in books.  In fact, he used my hands almost exclusively to communicate until he was about 4 years old.  Thirsty?  Grab Mom’s hand, jerk until she cannot shake you off any longer, then drag her to the cupboard and throw her hand up toward the cupboard where cups are kept.  I remember the first time I saw him point at one of his picture communication cards with his own finger to indicate he wanted something.  I did a happy dance and jumped up and down shouting all sorts of joyous jibberish to encourage more of it.  Yes, pointing is an awesome skill indeed.

Somehow over the past month, however, Luke has taken to pointing with his middle finger, and he is pretty blatant about it too.  A new employee was sitting on the couch in the entry way to his DDA (Developmental Disability Agency).  She was so sweet, and asked his name when we walked in.  He immediately gave her the bird and started yelling random names at her.  “Mariah, Angela, Kristen!”  Flipping her off with each name in the list.

Last week as I drove home from a therapy appointment, I glanced over my shoulder to make sure that Luke’s silence was not of a destructive nature.  He sat there in the back corner seat, all fastened snugly in his seatbelt, with his finger plunged vigorously up his nose.  He was clearly a man on a mission, and I decided it was best not to disturb such important work.  We continued driving in rare silence for several minutes. Suddenly, Luke came flying from the back seat, and before I had time to react, his birdie finger with the granddaddy of all nasal deposits was jabbed dangerously close to my eyes.

“Wipe it! Wipe it! Wipe it!” He howled as if the very sight of it caused intense pain.  I reached for the closest material I could find to rid him of the nasty buger – a Skittles wrapper buried under the drivers seat.  Luke recoiled as I held it toward him to unload his burden.  He was clearly distressed and started flipping that buger on his birdie at me again and again screaming, “Wiiiiiiipe it!”  He clearly had no intention of desecrating a holy candy wrapper with this nastiness.  I continued my swipe and search under my seat until I procured an old worksheet he had completed at school.  Finally, a material worthy for this job.  His relief was almost palpable as he wiped and rubbed his finger clean.

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One of Luke’s Walls of Candy. He would rearrange, retape and then name candies for hours.

In retrospect, I should have known better than to even suggest he desecrate a candy wrapper in this way.  This child loves all things candy, and will sometimes carry around empty wrappers all day just to look at them.  At one point he had a wall dedicated to all the candy wrappers he could collect.  He would carefully tape them and reorganize them every day.  How silly to treat such a treasure as nothing better than the common buger wipe.  After all, even Luke has his standards.

A Mommy Voice of My Own

I know; we all have those days when you open your mouth and out jumps your mother.  I remember the first time I heard Mom’s voice escape my lips; my oldest was about three and wouldn’t get in his car seat.  Before I had time to even think, I heard my Mom say, “You have to the count of three. One . . . Two . . . Two and a half . . Two and three quarters . . . .”  I don’t remember if I ever got to three, but I do remember laughing at myself for even trying to make the threat of the dreaded, “Three,”  as ominous as Mom did.  Since then, Mom has jumped out of my voice box at least a thousand times.  Lately though, I  have found some degree of humor in recognizing stuff that comes out of my mouth would never escape Mom’s lips:

  1.  “Don’t you want to just watch a show?  Pleeeease…” Mom is so energetic, she was always pushing us to do something active.  As Luke’s Mom, I am the polar opposite.  Just sit still for 10 minutes so I can repair the last disaster before you move to the next.
  2. “You have to put underwear on before you play in the snow.”  Yes, pants and shoes are optional at this point.
  3. “Can’t you just pick the paint off the wall?  C’mon I’ll help you get started.”  Hey, it beats kicking holes in the wall…
  4. “If you need to kick a hole in the wall, please do it in the bedroom.”  My dear father-in-law and his friend repaired and retextured all of our gaping holes while we were out of town.  Not less than 24 hours later, Luke had kicked a hole in the bedroom.  Here is a sample of his handiwork about a month later.
  5. “Stop throwing the computer (or printer or laptop or iPad)!”
  6. “I promise your bum is clean; can I please stop wiping it now?”
  7. “Can I bang my head with you?”  Hey, if you can’t beat ’em; join ’em, right?

Yep; I have developed a mommy voice all my own.