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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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.

 

 

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?
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    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!

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.