Eight Reactions to Avoid When You See A Public Meltdown

I snapped this after Luke finally calmed down following an intense meltdown at church. These experiences are obviously physically and emotionally exhausting.

It is a rare day when I venture out shopping or to any public event with Luke. It is something I really would like to be able to do with him, but stores and public places are high risk environments for meltdowns -public meltdowns that traumatize all of us.

We usually catch Luke’s meltdowns early enough to remove him from the environment before you would notice that my son is experiencing an autistic meltdown. However, he sometimes is triggered unexpectedly and rapidly moves from rumbling to rage. In these cases, he is probably down on the floor,kicking and screaming. He generally perseverates on a phrase – repeating the same thing over and over. He will try to break or tip over anything in his immediate area. If we can’t remove him from the area, we have to move stuff in his area to avoid damaging property and prevent injuries. To the casual onlooker, it probably resembles a massive temper tantrum that one might see from a toddler. The difference is that he truly cannot control himself; he loses his ability to reason.

Although the vast majority of people are very understanding and empathetic to our situation, I have had many experiences with people whose reactions to Luke’s meltdowns have been, shall we say, less than helpful. So, here are some suggestions of what not to do. All of these are based on real reactions I have seen while I manage public meltdowns with Luke:

PLEASE DON’T

  1. Try to connect with me – While I truly appreciate your understanding heart, I really cannot sit and chat about your nephew who also has autism. I am on high alert trying to protect Luke, store property, and other people from getting hurt. It is impossible for me to engage in a discussion about the challenges your loved one also faces. I know your desire to connect with me comes from a good place, but right now is just not the time.
  2. Offer me a tool to discipline my boy. This happens almost every time we experience a meltdown in public. I know this is usually done in jest, but it really is not that funny, and the message you are clearly communicating is that Luke’s behaviors are the result of my failure to discipline him. So, no, I don’t need your cane, your paddle, or your stick. I don’t even need your offers to, “Take that kid out to the shed,” for me. If these are your suggestions, please button your lips and just keep walking.
  3. Play 20 Questions – I get it. It isn’t every day that you see an 11 year-old rolling around, screeching on the floor. I don’t mind if you need to ask why he is doing that, but please don’t keep peppering me with questions.
  4. Coach me through the situation. Even if you are a professional behavior interventionist, unless you have experience with my son specifically, don’t tell me what I should be doing to manage Luke. In the entire 5 minutes you have had to observe and analyze my son’s behaviors, I doubt you have come to understand him and his motivations better than I do.
  5. Get between me and my son. Seriously. He isn’t going to respond to the shushing and petting of a stranger, and he may go after you. He may break your glasses, scratch at your eyes, bite, kick, etc.
  6. Offer him candy. While bribery can be a powerful tool in the arsenal of parenthood, this is not the time for it. Luke has a very keen emotional memory, and his meltdowns are very emotional for him. I do not want him to associate this negative emotional experience with a high value reward like candy.
  7. Gather to watch. This seems like social propriety 101, but we don’t need an audience. Believe me, I am already humiliated by the scene we are creating. Please, don’t make it worse by forming a crowd. If you must watch, could you do so somewhere out of sight?
  8. Share your passive-aggressive comments. I get it. We have destroyed your peaceful shopping experience. I am deeply sorry already, I don’t need to overhear your comments about, “this generation of entitled children,” (who manipulate their parents like this) as you pass by intentionally within earshot.

Public meltdowns are such a challenging part of our autism journey. I have discovered they bring out the best and the worst in the general public. While I have highlighted a few of the less positive reactions here, some of the most beautiful examples of caring have happened amid these harrowing experiences. (See my post, “Folks Who Get It.”) A simple word of encouragement can help ease the tension. One understanding mom simply whispered, “Keep fighting the fight. You’re doing fine.” Such simple reassurance is all it took to bolster my spirit to endure the public eye of scrutiny.

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Fears and frustrations

Unsettling fear and frustrations have taken up residence in the the front of my mind this week. I have become quite adept (with the help of medication) at filing unwarranted fear away to rarely visited recesses of my mind. Unfortunately, this week has brought paranoia to a screeching halt – front and center in my thoughts.

Lack of sleep, I am sure, is significantly contributing to my current state of mind. Luke’s sleep has become sporadic again. He regularly cycles through periods of good and bad sleep, but what makes this period so frustrating is the concurrent lack if impulse control. He has taken to tossing the computer, monitor, and printer overboard as a sure fire alarm to get Mom’s full attention. It is amazing how much a computer can withstand, but I think he delivered the final death blow this afternoon. Luke has reverted to lots of smaller challenges that add clutter to my mind and my house:

  • He throws canning jars and other glass dishes in order to experience the visual joy that transforming something whole and useful into thousands of glittering shards offers.
  • Emptying fluid-filled containers on freshly mopped floors is back into the daily routine. The stickier the better – entire bottles on dish soap on a tile floor makes for a slippery visual treat – especially when unsuspecting mom goes for a slide!
  • Even better, combine the two for a great reaction by shattering an unopened two-quart jar of apple cider for sticky and glittery shard appeal.

All of these are annoying and frustrating, but the greatest fear has come from Luke’s newfound skill of starting vehicles. This afternoon, Luke took the keys from the fireplace mantle and started the minivan in the garage. Tuesday, Luke slipped out of the house and went up to my parent’s where the farm equipment is stored. This is nothing new for him. We often walk up together and just sit on the tractors, combines, and trucks. It has served as a reward for good behavior. However, this time he went on his own and actually started several tractors and the combine. Without much effort, these powerful machines could have been put into gear with disastrous consequences. Thankfully, two employees were close enough to stop him before any damage was done. He discovered that this new skill creates a frenzy that only reinforces his desire to repeat the behavior – which he has done several times with less success since Mom’s paranoia has not allowed him to get much of a head start. He has found moments though. I cannot go to the bathroom without specifically assigning a sibling to watch him. His most successful run happened while I was distracted by checking up on reports of then Tropical Storm Harvey, who was parked over Port Arthur, TX and my oldest boy who is serving a mission there and is still holed up in his apartment as a result. Luke has an impeccable eye for when I am most distracted and takes advantage of that.

And so, I sit here with Luke pinned under my right leg for his safety and my sanity. I write to clear my brain and hopefully devise some great plan to discourage future incidents. Right now, punishment by utter boredom is the best I’ve got. Feel free to comment if you have inspiration that I lack!

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!”

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.

 

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.

 

 

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 . . .

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.