Miracles – Past, Present, and Future

Five years ago today, I packed up my little 4 pound and 1/2 ounce baby girl, complete with oxygen tanks and tubes and monitors and drove home. I think that day was one of the most overwhelming days of my life. How was I to protect this teenie tiny little being from the dangers of life at the Henderson home? I tried to explain many times to the hospital staff just how much I feared this day, but it came nonetheless. I tentatively introduced Luke to his new sister who was swaddled with care and tucked tightly in my arms. To my joy and delight, his face lit up with the biggest smile; his eyes sparkled and a little giggle escaped from his heart. I eased my grip just a little to allow almost six year-old Luke a little better view of his fragile baby sister. As he peered over her in what appeared joyous rapture, he abruptly slugged her little tummy then smiled as her high-pitched wails erupted.

That first year with baby #6 was the most intense of my life, and I have relatively few memories of actual moments. Just a blur of sleepless nights with Luke and the baby and oxygen monitors constantly beeping, being tugged around as Luke drove the oxygen tank, with baby attached, to get it aligned properly with all the other wheeled vehicles. Life was complete chaos, and Luke was its only master.

Even as I look back at the miracles that blessed Little A, I find myself begging for Luke’s miracle. A lot has changed in five years. A lot is still the same. Luke still terrorizes our little miracle girl. Thankfully, she has a highly developed fight-or-flight reflex. She is bright and sensitive and wonderful. She knows when to steer clear of Luke and how to stay safe when he starts rumbling toward meltdown. Unfortunately, Luke is still the master of chaos and he loves tormenting his little sister. Lately, he has been doing a lot of that.

Today was the day that a medical doctor put words to my greatest fear – you may need to consider placing Luke in a long-term care facility – and my heart is breaking that my head could even think such a thing. I cannot go there now; my little innocent boy has done nothing wrong. And yet it is a thought that has been lingering with me for many months as he has become increasingly violent and unpredictable. The psychiatrist watched today as Luke chased that same little sister around, laughing at her fearful cries, and expressed concern over the effect that a lifetime of this torment might have on her. He posed the great question of my life to me – the question that has no answer – how much do you ask the others to sacrifice in order to care for the one? I don’t know.

I do know that my other five children have sacrificed a lot, but I also know that they know a lot more about real life than other kids. They are strong and resilient; they love and forgive easily; and they are friendly to those without friends. They are all beautiful children and young adults, and living with the crazy chaos of autism in our home is a big part of why they are who they are.

And so, today I am remembering my miracles of the past and praying for a miracle to come soon. Until then, I will make it through this day and celebrate the little triumphs as they come.

Advertisements

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.”

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.

20170927_174224.jpg
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.

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!”

In Case You Ever Wondered . . .

Anyone who knows me well knows that I am a bit of a Facebook junkie.  I love sharing bits of my life with family and friends I am unable to see or talk to regularly.  However, I have noticed that I often use Facebook as a vent for the frustrating days we have with Luke and seldom do I really share what a beautiful soul I have the honor to raise.  For example, Luke has developed a new attraction to cutting things up.  Here are a couple of pictures that I posted to Facebook:

20170220_175558
Last week: my knitting cord cut and ripped out of the sweater I was working on, my earphones

 

20170228_100638
Today’s casualties: my sweater, hours of work on a crochet project, charger cord, and his little brother’s prized Valentine box

I am so quick to share the aggravating moments, but often fail to share the sweet ones.  So, in an effort to counter all of my whining posts, I want to share this beautiful one.

Last Saturday was almost magical. Luke was a sheer delight to be with. He painted all the pieces to the wood tractor with very little support. He was so patient and even waited for one coat to dry before putting on a second coat. After all the pieces were painted, he used screws and a screwdriver to assemble it. All I did was start it through the hole. That project took a couple of hours and he was so attentive and excited about it.20170225_155444 After we finished, he found some pics of tractors we had printed out and spent the next few hours painting them. It was a beautiful and magical day – almost like a window opened to the sweet little boy trapped in a generally uncooperative body. 20170225_155332.jpgLest anyone ever think otherwise based on my frustrated posts, I adore my boy. I love him with all my heart and just yearn for more days like these!

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.