Diary of an Autism Mom at Disney

Nothing is more humbling as a parent than your child having a very public meltdown.  Now imagine your child isn’t a cute toddler, but a tall ten year old boy who looks like every other kid, but has autism.  And despite your best efforts, he has become totally, irreversibly overwhelmed.  Now imagine this meltdown happening at the most magical place on Earth-Walt Disney World.  

I have been that parent.  More than once.  Not every day.  Not even every trip.  But six meltdowns over four trips on two coasts does make me something of an expert.  (And it’s probably no coincidence that three of these meltdowns happened during the only summer trip I planned-a relentlessly hot and humid week in August.)

95% of the time, my son, Luke, looks like every other child having the time of his life in the parks.  Eating a Mickey bar, jumping up and down with glee as Big Thunder rounds the corner.  Interacting with his favorite character, Stitch, at a dance party.  Wearing his Mickey ears, pulling us along to his favorite attraction, Astro Orbiter.  (An elevator AND a spinning ride?  Yes, please!)  And that is why we go.  The magic at Disney is strong.  No other place allows us, and my children, to be just like everyone else…even for only a few days.

But the other 5%?  Despite our best efforts of protecting his sleep schedule, diet and routine, he starts unraveling.  When the misting fan and Frog Toggs aren’t enough to keep him cool.  When we anticipate everything we know is a trigger, but can’t anticipate the things we don’t know will be triggers, that’s when it happens.  Boom!  Meltdown.

Humbling?  Yes.  Crippling?  No.  Never.  You see, it’s not only the place that is magical.  It is the people, too.  Disney Cast Members are heaven-sent.  I don’t know what kind of special needs training they receive, but it’s phenomenal.  And we have met more than a few regular folks who not only get it, but want you to know they are rooting for you, too.  These are some of our most memorable experiences.

Boardwalk (Out of the Sun-Thankfully!)-Disney World, April 2013

It was the first day of our first family trip, ever.  After an early flight from CT, we received some pixie dust and were upgraded to a courtyard view room at The Beach Club!  Life was good.  We spent that first day checking out the resort and swimming at Storm-Along Bay, celebrating our good fortune.  That evening we took the boat taxi to the Boardwalk resort for dinner.  Tired, but happy, we ordered from our booth and were relaxing sipping our drinks.  (We didn’t know then how much we would need them!)

Sometimes we feel like we are Luke’s handlers.  Or maybe his Sherpas?  Let’s just say he requires a lot of gear!  We had his favorite plush Yoshi he always travels with.  His favorite snacks and drinks were packed, as he rarely eats off a menu.  His folder of white paper and sharpened pencils was on the table, where he was contentedly drawing.  Until he wasn’t.

He started fussing.  Something was not turning out right in his drawing.  The regular assurances were not working.  He started protesting, voice raised.  He started crumpling paper.  People started to look over as my husband and I passed looks between each other as we tried to “make it right”.  He didn’t want a new piece of paper.  No, he didn’t want a snack.  He didn’t want to play with my iPhone.  Tonight he wasn’t having any of it.  He had been up since 4:00 a.m. and just like that he was DONE.

It continued to escalate…he was now thrashing in the booth and his voice continued to rise as he screamed “No!” at his drawings.  He swept the folder on the floor just as our server turned the corner with our tray of food.  We realized there was no turning back from this one.  As many restaurants as we had visited at home (because my main mission is to have my son a part of this world we all live in) we had never dealt with a situation like this.  Luke had never been this physically out of control before, and we realized we would have to leave immediately.

So, yes, you guessed it.  We had to carry him out.  Little sister had to carry the backpack.  Mom and Dad half carrying, half dragging this 80 pound whirling dervish through a crowded restaurant.  Other patrons had to stand up at their tables to make room for us to pass.  Our hushed apologies as we passed them.  The waitstaff were unbelievably understanding and accommodating…they wanted to box up our food for us, but realized we had no way to carry it.  They told us not to worry about the bill, even the drinks, as my husband tried to give them his credit card.  Sympathetic looks from the other diners, many also eating with young children, who knew that, autism or not, it could be any of our children.

I remember crying to my husband long after my son settled down.  The waitstaff’s kindness shown to us was truly remarkable, even though dinner that night ended up being Goldfish crackers and granola bars.

Pirates and Pals (Drama on the High Seas)-Disney World, July 2014

Luke had warned us.  Multiple times.  But we didn’t put the clues together.  It was the height of Frozen fever.  The movie played in a continuous loop at our house.  Luke was particularly intrigued by the scene where the parents sail off, and eventually capsize and die.  He liked talking through it, trying to understand.  He told us he was afraid of boats.

Fast forward to our July trip.  Since we didn’t have a full first Parks day, I thought it would be great to end our day with the Pirates and Pals Fireworks cruise.  I was excited about the party at the Contemporary, seeing Wishes from the water and most of all, meeting Peter Pan at the docks afterward.

Luke loved the party.  We took pictures with Captain Hook and Smee.  He ate more Mickey Bars and cotton candy than even a growing boy should be able to eat.  He happily walked down the docks, then balked at climbing into the boat.  (Mind you…we took a boat from the Wilderness Lodge to get to the Contemporary.)  He said, and I quote, “I don’t want to get on a boat.  I don’t want to die.”  Ummmm…  We were at a loss.  We had talked this up, rehearsed it with him, assured him that this was safe.

A meltdown was not even on our radar.  Eight months before we had traveled to Disney for five days over Thanksgiving, meltdown-free.  We figured what had happened our first trip was an anomaly…something that could happen to any child after an overwhelming day.  We were wrong.

He willingly got on the boat with our assurances.  He sat quietly, looking around, and I silently congratulated myself, thinking he just needed to see how awesome this was going to be.  The pirate trivia and songs weren’t engaging to him.  He wasn’t impressed when we floated past the Electrical Parade.  He was fixated on wrapping this up so we could go back to the resort.  Safe.

Then the fireworks started.  He was already wearing his noise cancelling headphones, but he had had enough.  “I want to go back NOW!”  It was the first of many insistences.  He didn’t scream, he didn’t cry.  He just quietly-and heatedly-protested, over and over.  For over an hour.  My husband and I took turns talking quietly to him, keeping him calm while still allowing my daughter to take part in the festivities.  Fifty people were having the time of their lives…the boat wasn’t turning around for him.

We were exhausted with the effort of keeping him calm by the end of the trip, but kept smiles on our faces.  (It was still pretty spectacular!)  As we headed into the dock, the large man in the row in front of us turned around to address us.  Though we tried to contain the meltdown, we were pretty sure our immediate neighbors knew what was going on.  In fact, I wouldn’t have been surprised if the back of the man’s seat had been inadvertently kicked once or twice.  Our hearts sunk, and we readied our apologies.

This bear of a man, who looked a little like a pirate himself with his beard and bandana, kindly said, “My son felt bad that your son didn’t win any of the trivia prizes, and he wanted him to have these.”  He thrust out a pirate hat and foam sword for Luke.  Honestly, I tear up even now thinking about it.

And Luke?  Once on dry land he was thrilled to meet Peter Pan, and happily boarded the boat shuttle to take us back to the Wilderness Lodge from the Contemporary.  Autism…I will never understand you!

When Hell Was “Frozen” Over-Disney World, August 2014

This is the story that will make you believe in Cast Member Magic!  My daughter, Lola, had been saving for months to buy impossible-to-find Frozen merchandise at Hollywood Studios.  It was easily a 95 degree day when we arrived at Wandering Oaken’s Trading Post.  As my daughter happily shopped, I sent my husband to pick up our tickets for the Frozen Sing Along.  I mean-what could go wrong?

Meanwhile, my son was attempting to remove his sunglasses as we came in from the heat.  They became tangled with the elastic from his Mickey ears.  I immediately offered to help but he pulled his hands away.  A small red flag went up, but I understand he wants to be more independent.  So I’m watching him and his movements are getting more heated.  A Cast Member asks if she can help and he tells her, “No-I can do it myself!”

Except I have crept closer, and it’s clear this is a problem he isn’t going to be able to fix himself.  Without the dexterity to work the knot, he has pulled on the elastic and it’s a tight mass of tangled knots.  Very matter-of-factly I say, “Luke, hand it to mom.  I’ll do it.”  He yells out, “No!  I can do it myself!”  Now he is crying in frustration.  His voice escalates and he refuses offers of help from me and the gathering crowd of Cast Members who are ready to help out in any way they can.  He throws himself on the floor, writhing and screaming, as we look on helplessly.  He refuses to let anyone near him or help him.  The autism has reared its ugly head and my poor boy is perseverating on a small problem with an easy fix.

This is the moment my husband returns.  He cannot believe his eyes, but doesn’t have the luxury to get the entire back story.  We quickly debrief, as both of us know what has to be done.  Luke will fixate on this as long as its in his hands, so we tell the Cast Members what we are going to do.  It’s over quickly…my husband jumps into action and secures his flailing arms and legs safely, and I extricate the hat and glasses from his closed fists.  Almost immediately Luke is on his feet…flushed, hot and sweaty, but already calming down.

We hustle him out the door and return his (untangled) hat and glasses to him.  All of us are out of breath.  Cast members are close by, seeing what we might need.  All of a sudden, a Cast Member named Desiree approaches us and says, “Dad, why don’t you take your daughter in to finish her shopping.  Mom, it looks like you and your son might need a minute to cool off.”  She motions us to follow her.  Luke is walking in a daze, almost sleepwalking.

We follow her through a labyrinth of passages reserved for CMs that I later realize connect Wandering Oaken’s with the Frozen Snowground.  This pavilion houses the Frozen ice skating, photo ops and real snow to play in…and the waits are long.  This lovely lady takes my son by the hand and leads him through the cool, dark pavilion.  We’ve already bypassed the hour-long line outside.

Luke is brought to the front of another long line inside…the line to play in the snow.  She tells the CM at the front that she is bringing a friend in to play in the snow, and for the next 15 minutes she does just that.  She digs in the snow with my boy.  They fill up a bucket together and make a snow castle.  He makes a snowball and shows it to her.  His color is returning to normal.  That dazed look is going away.  He smiles.

A mom comes up to me…a stranger.  She hugs me and says she was there and saw the meltdown.  That I did a great job.  That my son could have just as easily been her son, who is on the spectrum as well.  Another autism mom on this journey that brings both so much joy and so much heartbreak.  A reminder that we are not alone even when we feel we are.

‘Ohana Means Family (Feud)-Disney World, August 2014

It was our final day of our week-long stay.  We showed up for Rope Drop at Magic Kingdom with the intention of riding a few rides before our ‘Ohana breakfast.  We hit Fantasyland hard-all our favorites.  Barnstormer, Dumbo, the carousel.  The Barnstormer line was nonexistent, so they wanted to ride again.  This time, a Cast Member was waiting at the entrance, letting them know the ride would be down for a few minutes.

Luke was instantly upset…like flipping a switch.  He started crying and yelling, and charged halfway up the queue.  Every time we attempted to approach him, he went farther.  Cast Members were talking calmly to him from a distance.  They offered us Fastpasses to return later that day.  They asked how they could help.

Luckily, the train pulled in just then.  We did some quick talking and convinced Luke to join us on the train.  Cast Members were both holding the train and running interference back on the Barnstormer least he run back in.  We made it on the train and everyone applauded for Luke.  We all had a few minutes to catch our breath.

By the time we pulled up to the Train Station Luke was able to voluntarily walk to the monorail for the Polynesian.  Upon arriving, we found there was a wait for breakfast.  Luke was quiet, but still had storm clouds forming on his face.  As they went to seat us, we explained to the hostess that Luke was having a tough morning and asked if they might be able to find some paper and a pencil for him to draw with.  Somehow, they procured both white copier paper (his favorite!) and sharp pencils.

As we waited for the family-style breakfast to be served, the manager, Brian, stopped at our table and introduced himself.  He said that Mickey Mouse had heard that Luke loved to draw, and wanted him to have this.  From behind his back he brought out a beautiful Mickey sketch book from the gift shop.  Luke was so excited!  He immediately started drawing pictures of highways and maps, and even drew one for Brian to keep.  By the time Stitch made it to our table, Luke was back to his playful, happy-go-lucky self.  Such a small kindness that meant so much-to all of us.

Radiator Springs Racer Rage-Disneyland, May 2016

Our first trip to Disneyland on the West Coast coincided with both Tinker Bell Half Marathon weekend and Mother’s Day.  We were there for a long weekend only, and very excited.  Luke was now a big, strapping 12 year old.  The good news was his meltdowns had greatly decreased in frequency, but thanks to puberty and hormones, had increased in intensity.  Luckily, he could go weeks and even months without one.  Plus, his capacity for handling change and being more flexible had increased dramatically. He was growing up.

In fact, Luke was rewarded for his when we showed up to ride Toy Story Mania at California Adventure using his DAS pass.  (Disability Access Service)  The ride had just gone down, and would be unavailable for the rest of the evening.  Luke was obviously disappointed and upset, but held it together.  A very kind Cast Member promised Luke he was going to add a special “Fastness” to his DAS, and it could be used on any ride in either park-no exceptions.  Also, this pass would not expire overnight…he could use it in the morning.  We used this as an opportunity to praise Luke for his patience and control.  He was proud of himself and kept asking, “Did I do a good job?”

The next morning, we showed up at Radiator Springs Racers to use the special pass.  This attraction has well-documented long waits, and Fastpasses are usually gone for this ride by mid-morning, so we were feeling pretty happy and grateful to have access.  But, when the Cast Member went to scan Luke’s card, she curtly informed us that there was no Fastpass there.  Luke was immediately and visibly upset, and started protesting loudly.  I asked her to check again-and recounted our story from last night.  She rescanned his pass, again told us nothing was there, and then continued to tell us that all Fastpasses expire same day, and that we must have been mistaken.

Now Luke has started screaming.  We were at a loss.  I am certain I didn’t misunderstand what we had been offered the night before and I realize she simply does not believe me.  I make one more attempt-tell her it was a Manager who had to override something in his system to allow us to have this special Fastness, but it’s clear she still thinks we are trying to board the ride without a pass.  She makes a point of not addressing Luke’s meltdown, and shows no signs of sympathy, for any of us.

At a loss, I huddle with my family, still in the queue, because Luke is so out of control we can’t move him.  Then-and this is hard to write-he strikes me.  He lashes out and hits my arm.  This is a new behavior, and a heart breaking one.  Autism moms will understand, though.  We are the safe ones, the warriors.  We get their best, and we get their worst.  I burst into tears.

A different Cast Member approaches us.  She apologizes.  She is also mortified-I can see it on her face.  I take advantage of this small act of kindness, and ask her if she can just check our passes one more time.  I thrust all four at her.  Sure enough-the special pass is there.  It was loaded on one of the other three cards, not specifically Luke’s.  They usher us through, but no one makes eye contact.

Mickey’s “Not-So-Fun” Wheel-Disneyland, May 2016

My son has been admiring Mickey’s Fun Wheel for days.  He has not asked to ride it…not when there are other adrenaline-inducing attractions like California Screamin’ and the Matterhorn to ride.  On the final afternoon of our final day in our hotel room, he casually mentions he wants to ride the Fun Wheel.  Immediately I check the clock, knowing that all the attractions at Paradise Pier close down early for the World of Color show.

I prepare him for the two eventualities.  If it’s open, he may ride it.  If it’s closed, we will ride Radiator Springs Racers instead.  We rehearse these options orally a few times.  It is not a guarantee of success, but practicing helps.  We head from our hotel into the Parks.

It is the worst case scenario.  Mickey’s Fun Wheel is running, but the queue to guests has been shut for about 30 minutes.  The last of the guests have been boarded and are making their final rounds.  Of course, we are practically at the ride before we realize this.  The Cast Member explains this to Luke.  We explain it to Luke, too, and remind him about our Plan B.

Luke wants nothing to do with this.  He starts protesting and walks over to the empty queue and kicks the metal bar.  The bar looks like it’s now tilted.  I rush over to check on him and the bar, when I am intercepted by a Cast Member with a Rebecca name tag.  I immediately apologize, and show her that I’m wiggling the bar back into place.  She assures me that she didn’t come over to check on the bar, that she came to check on Luke.

Rebecca addresses him directly and acknowledges that he seems upset and she’d like to help.  She asks him if he would like to accompany her to the nearby gift shop-would he like to pick something out?  Hand-in-hand they walk across the boardwalk to the gift shop as my husband and I shake our heads in amazement, following behind.  In the shop, where he could pick out anything, he chooses a big, colorful lollipop.  Rebecca even asks Lola if she would like something, but she declines.  She whips out her magic voucher pad and pays for it, then sends Luke happily on his way.

Pixie Dust and Gratitude

When friends and family joke about us going to Disney again, I just smile and nod.  As wonderful as Disney is, I understand it can’t take away my child’s autism.  However, with such amazing Cast Members contributing to a climate of not only acceptance, but support, a family like ours can put aside our daily challenges, if only for a few days.  Luke and Lola can be like every child there, having the time of their lives.  Pixie dust isn’t just something you get from Tinker Bell, it’s the real life empathy and support that Disney Cast Members and guests like you bring to the parks everyday.  A very “magic” kingdom, indeed.

Jacqueline lives in Southbury, CT, with her husband and two children.  You can follow her on Instagram at @morphingintominnie.