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.

 

 

Advertisements

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:

23963

 

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.

 

 

 

 

 

23954

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.

2016-07-01 14.39.10
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?
    20160720_200716
    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.
  • 20160716_125132
    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!

Danger: Life-Changing Decision Ahead

“If you do not change direction, you may end up where you are heading” – Lao Tzu

This is the basic thought that has pushed me to a new idea – an idea that I would have considered ludicrous even a year ago – Let’s get a dog!

I have long held the mantra: I’m doing a good to keep my kids alive; I cannot be responsible for a pet.  However, I am beginning to wonder if keeping the kids alive would be easier with the addition of a service dog to our family.

I have been mulling over the idea since last summer when Luke developed the delightful habit of breaking away from me to go treasure hunting in the parked, frequently unlocked, cars of every parking lot we encountered.

The chiropractic patient/unsuspecting owner of a little green Honda  probably didn’t expect to find his bag of sunflower seeds happily scattered like confetti over the seats and floor boards of his nice, clean car.  And I hope the owner of the minivan in the Walmart parking lot was not really thirsty as Luke had downed half of the opened can of Coke before I could get Little A out of her car seat and catch up to pry Luke out of the strangers van.

Perhaps the scariest of Luke’s parking lot escapades happened when he bolted while I was loading his sister into the van after speech therapy.  He busted across the parking lot aisle and threw four or five small folding chairs out of the back seat of a car parked at the adjacent dentist’s office.  He squirmed and tugged at one arm as I tried to return the chairs with the other.  With a desperate lunge, he broke away and darted back across the aisle just in time to leap onto the hood of a moving vehicle.  The young couple in the car unleashed a barrage of vulgarities that still ring in my ears every time I pick him up.

Yesterday, I took Luke for a ride in his new garden cart.  He enjoys looking at all of the vehicles around the city and evaluating their potential for hitching.  Amid a particularly interesting inspection of a pickup with a camper already hitched, my boy spotted a row of wheeled wonderfulness under the eaves of the owner’s home.  In a flash, he was past the gate, maneuvering their ride-on tractor to be hitched to a trailer in their back yard.

After no small wrestling match I was able to get my boy reloaded into his cart.  On the short walk home, he broke away repeatedly.  He turned on sprinklers, uncoiled hoses, and relocated wagons at several neighborhood homes.  Just as I was beginning to wonder how I was ever going to get home, a friend drove by, picked Luke up and drove him around the block a couple of times while I ran the wagon home to meet him.

“If you don’t change direction, you may end up where your heading.”  I am not sure that I like where we are heading at this point.  I want my boy with me, in my home, with people who love him and help him out of that love; not in a facility where staff will manage him out of duty.  But Luke’s increasingly large stature and dangerous behaviors are forcing us to unpleasant considerations for the longterm future.  With a properly trained service dog, perhaps Luke and I could both enjoy a simple walk or trip to the grocery store again.  The dog would be tethered to Luke and trained to sit when Luke tries to bolt away, providing an anchor until I can catch up.

The dog would serve as a constant companion for Luke.  It would warn us when Luke is in danger or doing something stupid like lighting the toaster on fire.  In an ideal world the dog would be a friend to cuddle with at night, so Luke could sleep on his own and hubby could move back into the bedroom with me.

We met with a local trainer who showed us several different breeds that we might consider for Luke.  It is such a huge decision that would require new commitment of our time and resources to be trained to work with a dog effectively.  I never envisioned myself as a dog owner; I don’t know how to be a good dog owner.  However, I never envisioned myself as a special needs parent; I don’t know how to be good at it either, but I am figuring it out.  Maybe a change in direction will change where we are heading.  My head is screaming, Danger: life-changing decision ahead!

 

 

 

 

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!

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.