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:


  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.


Unlikely Hero

Late one Wednesday night, one of these characters saved me from certain doom – Death by GIGGLES! Who was it?

On a rather idyllic Wednesday evening, our family had just finished evening scripture study and family prayer when Hubby told Little A that it was time for bed.

“I am pretty tired,” she responded sweetly and yawning. She picked up her stuffed animal and trudged toward her bedroom, but the six-pack of easter eggs she had colored with Grandma earlier caught her attention as she passed by. She immediately put on her very best puppy-dog eyes and approached the parent most vulnerable to this particular attack – Mom.
“Can we please have just one little Easter Egg hunt? Oh; pleeeease?”
Ok, but then it’s bedtime.”
She fluttered off with the prized eggs carefully tucked under her arm.

Seconds later, a wail of despair erupted from the office. One precious egg had rolled from its hiding perch and cracked.

On any other evening, the ensuing tantrum would have become legendary. Her wails quickly moved from pitiable to pathetic to completely obnoxious. When she refused to be consoled, I quite unceremoniously sent her to bed with her older sister to ensure she stayed put.

While Big A wrestled with weeping Little A, I hunted for the remaining eggs, but only found three of them and gave up.

A few minutes later –

“EEEW! I found one of the eggs, Mom! Gizmo just barfed it up!”

Sure enough. There it was – completely intact with only a couple of cracked spots from the pressure of swallowing it whole. Even the tiny, white stickers Little A had so carefully adhered as decoration were still attached – now caked in slimy dog goo. We carefully rehid the almost-perfect-barfed-up treasure – deep in the garbage can – knowing that Little A

would come unglued if she realized she had lost yet another precious egg.

With the egg crisis temporarily resolved,

I went to bed – only to be awakened a few minutes later by eruptions of mad giggling as Luke blew into the room. He grabbed my arm and tugged me to his room.

Desperate for sleep, I decided to play along and plunked myself down on the floor next to him, lightly scratching his bare back in a drowsy attempt to calm him back to sleep. And yet, hours later, my little joker was still unsettled. Every time I dozed for even a moment, his maniacal laughter would jolt me back to consciousness, and I would dutifully resume my assigned post as back scratcher.

Around 2am, Luke decided he was done with his evening back rub. It was time for a midnight snack. He plowed headlong into the kitchen, giggles still erupting freely, and made himself a plate of chips with cheese. I sat on the couch – half asleep & half listening for him. He finished his snack and dragged me back to his room where I promptly collapsed. He shut the door and turned off the light. Finally – sleep!


As I played dead,

Luke’s giggles continued to overflow. It was like he was reliving some hilarious joke and kept replaying the punchline – over and over and over. He just could not stop laughing. After another hour or so of this, I am DESPERATE for sleep and decide it is time to give him some more sleeping meds.
I dragged myself up, stumbled toward the door, stubbed my toe on the bed frame, flipped on the light, and reached for the doorknob. It was LOCKED! (**Important note – the doorknob is turned around backward so we can lock him in when he is just completely out of control.) Usually, when this happens, I can just use my fingernail to twist it open, but they are all too short to get into that little slit and twist it open. UUURGH!

At this point,

Luke is just busting a gut watching me fiddle with the doorknob and I realize that I AM THE PUNCHLINE TO HIS JOKE! I am SO, SO TIRED, I just cannot even think straight. I am digging through the blankets on the floor, looking under the bed, trying desperately to find some tool – a hairpin, a paperclip, anything – to me get out of this room and to those magical meds that might SHUT THIS KID UP!


I am so desperate, I completely lose it and start banging on the door to wake someone up.
Luke thinks this is even more hilarious, and I don’t even care at this point. I am pounding and pounding.
So I start yelling into the air vents. I am right above my teenage son’s room. Surely he will hear me. “WAKE UP!! SOMEBODY WAKE UP! LET ME OUT!”

Hubby is always complaing that he can hear us walking around above him when we are up, so I start jumping up and down like a wild monkey, screaming, ” WAKE UP, WAKE UP, WAAAAAAAKE UP! LET ME OUT!!”



I am in tears and just…. so…. desperate. Luke is utterly maniacal and simply cannot contain the belly laughter. He is literally rolling on the ground laughing uncontrollably.

Then, I hear it . . .

“Mom? Mom? Where are you, Mom?”
Oh; Hallelujah! I finally woke T up.


T finally released me and I am just a sobbing mess. I fall out of the room and hug him.
“I was afraid I would never wake anyone up! Thank you! Thank you!”
“You didn’t wak me up, Mom. I just got up to tell you that Gizmo puked on my bed.”

At least I am free. I trudge downstairs to clean that mess up, but God bless that stupid dog, he had it all cleaned up already by the time we got down there. I sent the dog outside – just in case it didn’t stay down – again.

At this point, I started to wonder what was up with the rest of the family. Why had they not woke up with all that racket? I got a sick feeling in the pit of my stomach and went to check on D, the teenage son directly under Luke’s room. His door was locked, and I about cried at the prospect of having to open another locked door. I banged on it a few times, but then found something to pick it. His TV was blaring; his body was lifeless on the bed. I started screaming at him and slapping his feet, convinced that the whole family must be dead from carbon monoxide poisoning that was making Luke crazy too.
Finally, he sleepily sat up, and I came unglued on him.
“SHUT THAT STUPID TV OFF! I’ve been screaming at you for hours!”
He stood up and shut off the TV.
It is about 4 am now. I went back upstairs to get Luke his meds, praying to catch a couple zzz’s before I have to get up for work. When I get into the living room, I hear Luke in the bathroom. He is sitting on the toilet, banging on the wall and screaming, “JOHN! JOHN! WAKE UP!” then bursting into laughter, reliving the funny scene in vivid detail, mocking the desperate inflections of my voice.
He finishes his business on the toilet and decides he needs a bath (as usual whenever business is #2). I give him his sleeping meds while he fills the tub then collapse on the couch to rest a little as he takes his bath. Pretty soon, he is jumping up and down in the bathtub screaming, “JOHN, JOHN!” Clearly, he enjoyed my monkey dance too.
I didn’t even move to stop him. Just sat there praying for his meds to kick in and put an end to my misery.
I glance up at a noise from the office and see John standing in the doorway. The monkey dance in the bathtub finally woke him.
He stood there in bewilderment staring at the messy lump of tears on the couch. “What’s wrong? What’s going on?”

“Just listen to him! CAN’T YOU TELL?!” Luke was still in the tub, doing my monkey dance, copying my desperate call for help, and laughing uncontrollably.

In the end, we finally slept an hour or so before going to work. And the next day? Teenage son had no memory of the night’s antics at all.

Gizmo was the real hero of the night for swallowing another egg whole, puking it up, waking T to save me and then cleaning up his own mess. My HERO!

Not That

I have eight siblings – six of them brothers. This means I grew up fighting. Not knock-down, drag-out, beat-your-guts-up kind of fighting (ok we had a few of those too), but slamming, arguing, I-hate-your-living-guts kind of fighting. Whenever we were on the losing end of such a battle and desperation set in, we needed to communicate that the offending sibling was, “the pus that infects the mucous…that cruds up the fungus…. that feeds on the pond scum.” Lacking the eloquence of Michael O’Neill in My Best Friend’s Wedding, we had a word for that – Retarded. It was the low point of any argument, and generally a signal that any substantive debate was now thrown out the window.

Last week I had a conversation with a man I have been working with for over a year in an effort to help Luke. He is the parent of a grown child who has special needs, although I do not know the nature of her special needs. Over the course of our discussion, I asked about a business she had become involved in. The response I received from him jarred me to the core and made me question everything about doing business with him. He called into question his daughter’s ability to provide the service she was offering through the business, and then went on to say, “Let’s face it, she is a retard.”

“She is a retard.”

Now, let’s just leave that hanging there for a minute while I explain. I am not one of those overly-sensitive, politically-correct people who gets involved in debates over whether Luke is called, “autistic,” or, “a boy with autism.” (And, yes, for those of you outside the autism community, this is a very real debate.) As a general rule, I think our society often makes too much of missteps in verbiage, and many of us take offense where no offense was intended. Honestly, I think a lot of society today just lacks the education to know how to refer to different groups of people without causing offense – myself often included.

Indeed, most of the times I have heard this particular term used, it is by immature children or teens. It is not a nice word no matter how it is used, but I can usually chalk these instances up to pure ignorance or mean-spirited fighting – like my own use of it during sibling wars. Generally, it is used by typical kids who need to be taught about the damage their words can inflict.   I am not sure how the parent of any child – let alone one with special needs – could possibly be ignorant of the incredibly derogatory connotation associated with calling another human being a retard.

I was so shocked by the flippant reference, that I simply did not react. We finished the conversation, and I just let it sit there to consider over time. Generally, when things like this happen, I mull over the comment and come to realize that it’s not such a big deal, that the offending party was ignorant or that I simply misunderstood. Not this time. The more I sit with it, the more repulsed I am. I know he was trying to make a point that was salient to our conversation, but it was so callously uttered, with such complete disregard of his daughter, that it replays negatively no matter how I try to reframe its context. If this man would say this of his own child, what must he think or say of Luke? I can only imagine the words he has used to describe my boy.

In the nine years since we realized Luke was not just a typical boy, I have used many words to describe his behaviors. He has been challenging, frustrating, and aggravating. Sometimes he has been mean and violent. He has even been down right annoying, but NEVER a retard. Luke is not that. This man’s daughter is not that, and no person should be labeled as such for a condition which is beyond their control.  If we cannot speak with understanding, at least let us speak with compassion.

Culinary Deception

Tonight, we spent the evening trying to teach Luke to swallow a pill. He is on a new medication that he must have to control his increasingly violent outbursts, but getting him to take it is wreaking havoc. Our challenge is Depakote – available in happy white sprinkles or syrupy pink liquid. Both options could be presented as downright festive if consumption was based on appearance alone. Since taste matters though, we have delved into the dark art of creative culinary deception. We have made Depakote mashed potatoes with cheese, Depakote burgers, and Depakote quesadills. For a lighter treat, we introduced (with short-lived success) toast with a side of Depakote raspberry jam. With its rejection came the epic treat: vanilla-Depakote ice cream with Hershey’s chocolate syrup – the perfect solution – for about 3 weeks.

Repeated rejection of sprinkles moved us to try that enticing pink syrup in a classic Depakote smoothie and Depakote-laced Gatorade and orange juice. Now he’s onto us hard core. He knows all our tricks, and he is not having any of it. In fact, now he distrusts us so completely he will not even taste the food I give to him. If he didn’t make it, he won’t eat it.

And so it seems we have reached an impasse. If he could just swallow the stupid capsule, our dogged game of cat and mouse could end. So tonight I laid out all the options before him and explained, “Luke, you have to take your medicine, but you can choose how to take it. Here is a yummy Depakote Sunday, a Depakote- Strawberry Gatorade, a syringe of straight up syrup, a pile of happy sprinkles, or a capsule. How do you want it?”

Well, that went over a lot better in my head than it did in real life. He completely freaked out and bolted in fear at the sight of the syringe.

OK. No to the syringe of pink syrup.

With that option gone, we brought him back for further negotiations. He tried the pink drink suspiciously. Nope. That ain’t happening either.

The sunday was up next and rejected just as quickly. Finally, he decided to try the pill.

I have been saving up empty capsules just for this occasion, and we began Pill Swallowing 101 – a course which will take many lessons to master. It quickly became evident that the pills are just too big as a starting point, so I cut up tiny pill-sized chunks of banana as a more reasonable starting point. He actually swallowed three or four of these without chewing them up first. Yay! It’s a baby step!

After about an hour of waffling on how to get at least a part of the medicine down him, we dumped some sprinkles in water and he swigged down the liquid. It was important that he not see the banana “pills” as an alternative to his medicine. It was not a beautiful, eloquent lesson, but I can see that he genuinely wants to learn and was trying.

So here’s to hope! It may be a bitter pill to swallow, but it’s better than a Derpakote Sunday. Huh, who knew?

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.”

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?”


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?
    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!