The vacation that was.

The annual family trip to the shore has come and gone. It was.. an interesting one this year. Let’s start at the very beginning. A very good place to start.

Day 1

This year, we had to take two cars. Our parents finally retired the Grand Caravan, so packing space was at a premium and packing less was not an option that crossed anyone’s minds. Therefore, my car and their car got loaded up. Dude was given the option of riding with me or Dad, and he chose me. I may have forced his hand by nonchalantly mentioning that I had made a Disney playlist specifically for the ride, but still. He chose me!

It’s been a running joke in the extended family for years that our family of four never leaves for vacation when we say we’re leaving for vacation. We tend to miss our planned departure time by many hours. When I was a child obsessed with boogie-boarding and building sand castles, this ticked me off greatly. I would hover and glare at my parents, my stare getting more “if looks could kill” every minute past 12pm that we didn’t leave.

Now that I’m older, I’ve given up any hope of leaving around midday. This year, we got on the road around 4:15pm and I was only mildly disappointed. That’s a little something I like to call Personal Growth.

As soon as we got into the car, Dude looked at the stereo system expectantly and declared, “HAKUNA MATATA!”

“It’s on the playlist, bud,” I responded. “I’ll put it on shuffle and Hakuna Matata will eventually come on.”

Naturally it was the third to last song that shuffled through the playlist.

Still, Dude loved it. When Disney was done, he requested marching band music. He was smirky and talkative and radiating joy by the time we got to the shore. As we pulled off the highway, I rolled down my windows so we could breathe in the salty air.

Day 2

As I’ve mentioned before, Dude doesn’t typically sleep through the night, I’m a light sleeper, and we unfortunately have to share a bed while on vacation.

The first night there, I couldn’t sleep. The older I get, the more problems I have falling asleep the first night I’m in a new or different place. It’s exceedingly annoying and unfortunate. Dude, however, passed out and slept pretty much through the night. Around 6am, I finally started to fall into a deeper sleep.

And this is where I struggle with what to tell you next. You see, I’ve read a fair amount of blogs written by individuals who are on the spectrum. And reading those blogs has made me think about how privacy and respect are unequivocally tied. I would never want to be disrespectful of my brother and his story. But sometimes his story and my story intersect. And sometimes I feel like I need to tell my story for my own sanity** or because I think people will benefit or learn from it. So I try to strike some kind of medium, and I pray that that medium doesn’t hurt anyone’s feelings.

**I’m also trying to “talk about my feelings” because I’ve heard that’s “healthy” or something like that. Squashing down your emotions because you’re afraid of burdening people or sounding like a Debbie Downer isn’t what you’re supposed to do? Weird. 

At 6:15am, my eyes shot open as Dude shot out of bed with a full-blown meltdown. I’m leaving out the specifics, but suffice it to say it was a big one.

Normally we can figure out what prompts these things. In this instance, we had no idea. Excitement for the first full day of vacation? No clue.

The rest of the trip

This was the tone that set the rest of vacation. Every day there were at least two meltdowns. We started going to a different, less crowded beach because we thought maybe the combination of kid noises and waves at our regular one was too much. We went to the arcade at “off” hours so it wasn’t as packed. We only took walks on the beach at low tide so we didn’t have to worry about the sound of loud crashing waves startling him. We had him wear ear plugs when we weren’t in the condo. I slept on the couch for the rest of the trip so he could have the room to himself and go through his night-waking/self-soothing routine without me getting mad at him for waking me up. We skipped going to the beach a few days.

Nothing seemed to help. We all sat and stared at him on the beach, watching his body language, waiting for when he would run (for those new around here, Dude meltdowns generally include running and he has no safety awareness). I held my Kindle in one hand and let my other hand hover a few inches from his arm so I could quickly grab him if necessary. It was the opposite of relaxing.

A lot of individuals on spectrum have difficulty when their routine is changed. Vacations can therefore be hard. Some families just don’t take vacations. That’s their reality.

That has never been our reality. Dude has never had that problem. He has always thrived on vacation. He eats better, sleeps better. He’s basically in zen mode at the beach.

I can’t speak for the other half of the family, but I know I was shocked that our reality/the script was flipped this year. And I wish he could tell us why he was struggling, but he can’t. Surely he must know that we would bend over backwards to make him comfortable? I hope that he has that knowledge, that he knows we’re in his corner and have his back and want to lessen his burden when he’s struggling. And I wish it were enough to help him find his calm when he can’t tell us what’s upsetting him, but it doesn’t seem to be. Not right now anyway.

I came back from vacation feeling like I could benefit from a full day sibling support group. It’s times like these that I wish I knew more siblings like me that I could reach out to and say, “I really need to talk through this.” Because it’s a tough spot to be in when you have conflicting emotions of “my brother is hurting and I want to help him” and “my brother is stressing me out and I’m actually looking forward to going home.” I want to be the saint that only feels Option A. But I’m not. So there it is.

I have great friends who do their best to understand, but they haven’t lived it, so it always requires a lot of back story and explanations and leaving out certain parts of the whole picture/truth. Sometimes I wish I could just word vomit and not have to give the extra explanations. It’d be nice.

It’s also awkward when you come back from vacation and everyone is like, “Did you have a good time?!?” And you pause one second too long and finally, reluctantly say, “Yeeeaaaa.”

I’ve never been a good liar.

————————–

As there is lightness with the not-so-light, here are some Dude-isms from vacation.

Mom: “Alright Dude. If we hustle, we can make it across the street before that car comes.”

Dude: “DO THE HUSTLE.”

—-

Mom: “Aww look at that old man in his little suit!”

Dude: “ZOOT SUIT RIOT!”

—-

Dude: “Oopsie daisie!”

Dude: “I love drum corps! I love going to see the Terps!” (said in a tone like he was responding to someone who had the audacity to suggest he didn’t)

Dad: “Dude, show Mom.”

Dude: “NOOOOPE.”

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#HygieneFailRedux

Before you read this post, you need to go back and read a post that was originally published in March of this year, #HygieneFail.

Go on. I’ll wait.

Did you read it?

Swear?

Lovely.

Ok so.. On the first evening of our annual family vacation, Dad prepared to help Dude with his nighttime routine.

I had unpacked all my toiletries first that day and hadn’t been in the bathroom since.

Dad called to me from the bathroom, “Julianne, which toothbrush is yours?”

“The green one. Did you hear that, Mom? The GREEN one!!! Not the right one or the left one, but THE GREEN ONE!” I yelled in response.

Dad appeared in the doorway, “Come look at the toothbrushes.”

I rounded the corner and looked at the shelf where the toothbrushes are kept.

“Oh… Well, crap.”

toothbrushes

 

 

 

 

 

 

Three. Green. Toothbrushes.

Whale Speak

For the better part of at least a year, Dude watched Finding Nemo every day. Every. Single. Day. And it’s not like he would watch it through once and be done with it. Oh no. It would take him at least three hours to complete one viewing of the movie because he would rewind his favorite scenes and play them over and over and over again, all the while humming or mumbling along using the exact inflection of the characters onscreen.

Because of Dude, our family is fluent in Finding Nemo. We make oddball references to it every time the situation presents itself.

On our recent family vacation, whales came up in the conversation.. probably when a dolphin/whale watching boat went by.

Me, being weird and brainwashed by Dude, immediately did my best Dory-speaking-whale impression.

“Do YOOUuuu knooOOOwwW how toOo get toOo SyyyDDddnneeeEyyy?”

I then turned to Dude, “What movie is that from?”

And this is why I love my brother. He could have just said “Finding Nemo,” nice and easy. But he didn’t.

In his best whale voice, he answered, “FIIIiiinnnDDiinnGGG NEEEeeeMmmoooOooo.”

Dude speak

I have an audio file that I want to upload, but I can’t figure out how to accomplish that, so you’re getting the less interesting medium of words.

Every year on vacation, Mom and Dad treat themselves to a date night. They go out for a fancy dinner and Dude and I hang out. This year, we headed to the arcade to pass the time. While walking back to our place at the end of the night, I was compelled to record a voice memo on my phone. I wanted to capture the hilariously shifting gears of Dude’s brain as we walked along.

Me, in the recording: “Walking on the boardwalk, Dude jumps from “Afro Circus,” to “Whoomp There It Is,” to “Hey Jude,” to “Jungle Boogie,” to “Manha Manha.”

At the mention of “Manha Manha,” Dude cut in with the word he associates with that song:

Dude: In the wash for the phenomenon. It’s gone! It’s gone!

Me: It’s gone!

Dude: Empty for the fooooyacksem

Me, laughing: What?

Dude: All gone for the shoooooo

Me, playing along with the script: All gone for the shooooo

Dude: In the wash for the shooooo

Me: Shoooooo

Dude: In the wash

Me: What’s in the wash?

Dude: What’s in the wash?

Me: I don’t know.. You tell me!

Dude, sing songy: What’s in the waaaash?

It’s more entertaining in the recording. Or at least I think it is.

But anyway, let’s break down the only song choice that I understood out of the bunch.

Dude started singing Afro Circus about 30 seconds after we left the arcade. It took me a second to figure out why, but then I realized that the game next to the skee ball lane we were on was playing the traditional circus theme, which is what is used in the Afro Circus song.

 

I have no idea where the other songs came from. But he sang about 5-10 seconds from grincheach and jumped between all of them over the course of two minutes. And then he threw in some, “You’re a Mean One, Mr. Grinch” just for good measure.

The kid cracks me up.

Getting in some sprint work on vacation

Yes, I’m still talking about vacation.

People find it hard to believe that I rarely fall asleep on the beach. On a recent day trip to the shore with my roommates, I actually did doze for a bit, which led me to a bit of a revelation. It’s not that I never fall asleep on the beach, it’s that I hardly ever sleep when Dude is present.

Now that Dude isn’t as big of a flight risk as he once was (picture 5 year old Dude unable to sit still and constantly chasing seagulls), our parents relax more on the beach. They put in their earbuds, recline their chairs, and close their eyes.

While Dude isn’t as likely to pop up and run away, he still has the randomly occurring angry outburst that results in some good old-fashioned sprinting. Awhile back (ok, 2.5 years ago), I wrote about Dude having one of those “incidents” at the beach.

On this vacation, we spent many long days on the beach. Our favorite times are either first thing in the morning or the late afternoon. The sun is warm, but not unbearable. The beach is much less crowded. It’s just lovely.

This was a late afternoon. Dad’s chair was completely reclined and he was asleep in it. Mom was listening to music and in the partially asleep state of sleep. Dude and I sat next to each other. I was engrossed in a book, and he was halfheartedly holding onto some brochures while looking around.

Suddenly, he popped out of his chair, made his angry noise, and took off running down the beach.

“Crap,” I muttered. I jumped out of my chair, threw down my Kindle, and sprinted after him.

I heard a confused, “Oh” behind me as Mom startled awake and pulled out an earbud to see what was going on.

Dude ran about 30 yards down the beach before slowing his pace as he approached the water. The ocean was very calm, so I didn’t have to worry about him getting knocked over by a wave. He went in the water up to his shins and stopped. He turned as I came up behind him. Dude was rubbing his thumb, index, and middle fingers together on each of his hands. You can judge how perturbed he is by how frantically he’s rubbing his fingers.

“What’s up, man?” I asked.

“Not yet,” Dude answered.

“Are you upset?”

“Yes yes yes.”

“Are you happy?”

“Yes.”

Sigh. Sometimes it’s so frustrating that Dude doesn’t have the expressive language skills to be like, “Hey, we didn’t take a walk today and I would really like to take a walk but you all were sleeping and that annoyed me.” (I have no idea if that was the cause of this particular meltdown, but it was my best guess at the time.)

“Alright, bud. How about we do a lap in-between the jetties on this beach?”

“Yes yes.”

By this point, Dad had made his way down to where we were standing to assess the situation.

“Everything ok?” he asked.

“Yep. We’re gonna walk it out,” I responded.

“Hey, at least you can tell your trainer you got in some sprint work!” Dad smirked. (I did one of those crazy Tough Mudders back in June and worked with a trainer to get ready for it because I didn’t want to injure myself. I decided to continue seeing him once a week after the race because I learned a lot from him and wanted to keep progressing.)

So Dude and I walked back and forth on our beach. I went through the entirety of the Maryland Truck and the Mighty Sound of Maryland’s pre-game show. By the time I reached the Fight Song, he was smiling broadly.

No idea what caused the outburst, but at least he regulated himself quickly afterwards! Dude is such an enigma sometimes.

Late night standoffs

In some ways, our parents are really lucky they have one kid with autism and one kid without autism.

The place we stay at during vacation only has two bedrooms and two beds. Therefore, the siblings in their mid-20s are forced to share a bed for the duration of the trip.

That wouldn’t fly with typically developing siblings.

But as I see sharing a bed with Dude the lesser of two evils when compared to sleeping on the couch, I grin and bear it.

While Dude has never been a particularly fabulous sleeper, he has gotten better over the years and he normally sleeps quite well on vacation as a result of increased physical activity.

Sadly for me, Dude was unable to take his hour and a half walks for several days because the sand was unbearably hot. The shore is normally on the cooler side when heat waves park themselves over the region, but during this particular wave, we had several days in the 90s. On one of the first days of aforementioned heat wave, we made the mistake of trying to take a family walk and ended up with burnt feet courtesy of the sand. The next few days were spent either hiding under the umbrellas or dragging our chairs down to the water to stay cool.

This lack of expended energy, coupled with Dude’s somewhat new-found stubborn streak led to some late night standoffs.

I’m a light-ish sleeper. As I get older, I’m becoming increasingly sensitive to light and sounds. Sun is peaking through the blinds at 6:00am on a Saturday? My body decides it’s time to wake up! There’s a light tapping sound that I can’t identify? My body refuses to relax until I can identify it.

This would be fine if I was one of those people who doesn’t need a lot of sleep to function or who enjoys staying up late. Alas, I am one of those people who becomes a tall two-year-old when I get less than seven hours of sleep.

Night 1

I became aware of Dude moving around at 1:23am. I tried to ignore it, hoping he was just shifting around to get comfortable, but I felt his weight leave the mattress a short time later.

I rolled over and blinked my eyes open.

“Dude, what are you doing?” I asked.

Dude looked pensive. He made a dash for the closet, which was on my side of the bed.

“No Maryland shirt,” he said.

“We set out two shirts on the chair over there for you to look at, buddy,” I answered.

Next, Dude pulled open the “door” to our room. “Door” is in quotes because the door on this particular room consists of plastic accordion material that you pull from left to right to close.

He hurried out into the living area and sorted through papers on the table. I trailed after him. The locking system on the room is not as thorough as the locks our parents have in place at their house, so I wasn’t about to go back to bed with Dude on the prowl in the middle of the night.

Dude pulled off two brochures he wanted to look at.

“Ok. Back to bed,” I commanded.

I got Dude back to the room, but he slammed on the brakes at the foot of the bed. He did what we call his “feet in cement” routine. For a kid with low muscle tone, he suddenly becomes quite good at making himself immovable.

I climbed back into bed, hoping to model the appropriate behavior.

“Get in bed, Dude.” I said.

No response.

“Dude, come on. It’s 1:45. Time to go back to sleep.”

“Nope.”

My patience was wearing thin.

“Get. In. Bed.” I said through gritted teeth.

“Not yet.”

I got back out of bed and attempted to lightly push him. No dice.

I took a couple steps back and frowned, plotting my next move. Dude must have thought I had given up because he relaxed his stance ever so slightly.

I seized the opportunity of decreased resistance and gave him one solid push. That was enough to get him moving and get him into bed.

Total time out it took to coax him back into bed: 25 minutes

Amount of time I spent trying to fall back asleep: 10 minutes

Night 2

Before bed, I brought all the papers into the room that Dude had acquired that day. If he woke up the night before because he was obsessing over where his papers were, I was going to eliminate that anxiety by letting him see that ALL the papers were on his bedside table.

At 2am, I realized Dude wasn’t in bed. Again, he was hovering at the end of the bed.

I sighed. “Dude, all of your papers are here. See?”

“Not yet,” Dude responded, rubbing his fingers together, a habit that increases in intensity when he’s anxious.

For the next 15 minutes, I tried to get him back into bed.

At one point I grumbled, “You think you’re stubborn? You’re in the ring with the queen, my friend.”

He gradually worked his way over to the side of the bed, but got “stuck” and couldn’t transition to laying down. I helped him out with a move I like to the call the “Hip Check” (done very gently, of course).

Total time it took to coax him back into bed: 30 minutes

Amount of time I spent trying to fall back asleep: 30 minutes

Night 3

I was REALLY tired of this game at this point. And this was the night Dude decided to wake up at 3:45AM.

This time, he tried to go out onto our BALCONY. AT 4AM.

“What are you doing?!” I hissed at him, trailing him into the living area as I had done previously.

He found additional papers to bring back with him and got into bed faster than he had the two previous nights. I, however, wasn’t so lucky.

Total time it took to coax him back into bed: 20 minutes

Amount of time I spent trying to fall back asleep: 1 hour and 15 minutes

I can’t even begin to describe how grumpy I was that day. Three nights of interrupted sleep had taken their toll in a big way.

When we arrived at the beach, I had a request.

“Can I not sit next to Dude today? I’m mad at him.”

Turns out, Dude’s a reader now

I’m back from hiatus!

And where was I, you might ask?

The According to Dude family was on our annual vacation. And man oh man did we take this vacation seriously.

Of the ten days we were at the shore, we went to the beach on nine of them. Dad took his leisurely stroll to get coffee each morning. Mom slept past 8am most mornings (!!!!!!!!). I read two books and completed multiple crosswords WITHOUT CHEATING/ASSISTANCE (!!!!!). And Dude enjoyed sleeping late, eating well, going to the arcade, walking on the beach, and reading the paper (more on that later).

After the upheaval of the past year, we relished the opportunity to be complete bums together.

It helped that the weather was absolutely beautiful. It rained for 20 minutes one afternoon, after which the sun promptly returned. It was a great improvement over last year’s vacations. First there was the one in June 2012 when we went to Florida, our grandmom died the second full day we were there, and then we had torrential rain the rest of the week. Then there was the abbreviated trip to the Jersey shore in July 2012, when violent thunderstorms chased us off the beach every single day starting between 12pm and 2pm (which is a real bummer when you don’t even get to the beach until 11am).

At the conclusion of this year’s vacation, we all agreed it was the most relaxing one we’ve had in the past 5-10 years.

It was also really nice to be around Dude for an extended period of time. Though, like any brother, he got on my nerves about halfway through the week. But that’s another story for another time.

Our first Dude observation from vacation was his sudden interest in reading the paper.

Let’s have a quick little discussion about why this is significant. In addition to having an autism spectrum diagnosis, Dude is diagnosed with intellectual disability. While attending his approved private school, his educational focus was different from what his “typical” peers received in public school. There wasn’t the emphasis on standardized math and reading. Dude’s goals were to improve his life skills such as handling personal hygiene and taking more responsibility for daily living tasks such as helping to prepare breakfast, unloading the dishwasher, etc.

Towards the end of his time in the school system, his reading comprehension was tested. If memory serves me right, he tested on a third grade level, which we were very surprised and pleased about. Dude has always been good at recognizing signs and mottos for his favorite stores and reading short children’s books, but for a while we (erroneously) thought that was the extent of his abilities.

Lately, Dude has been showing us how wrong we were.

For some time now, Dude has been obsessed with picking up free pamphlets and brochures everywhere he goes. Stopping at Wawa to grab a snack? There’s a free brochure about Hoagie Fest? Dude grabs it. Going to a concert? Dude will slam on the breaks until the program is in his hands. Dude will hoard these items and peruse them while laying on his bed.

Dad is a regular newspaper consumer, but Dude has never given much interest to this form of print media. Y’all know how the texture of newspaper can be a bit displeasing. Well, we always thought it was especially displeasing to Dude who is Mr. Ew Oh My Gosh Something Is On My Hands I Can’t Focus Get It Off NOW. Apparently we were wrong.

newspaper

Reading every inch of the paper? Psh. Totes normal, guys.

One morning, Dad left the newspaper on the table near Dude, who was finishing up breakfast. After his plate was cleared, Dude reached for the paper and pulled it towards him. He then opened it up and STUDIED it. I’m pretty sure he went through and read every single word and looked at every single picture. It felt to me like he was actually consuming and comprehending it.

Later in the week, he grabbed one of the papers that has a full listing of weekly activities for the town and spent an afternoon on the beach completely absorbed in it. He didn’t even want to go on a WALK because he was too busy reading.

Let me repeat.

Dude didn’t want to go on a WALK because he wanted to READ.

During one of the walks we did go on, we passed a man preparing to head out in his kayak. The vessel was sitting just at the water’s edge in the sand. Dude glanced at it as we passed and said in his sing-songy voice, “Drifterrrrrr.”

“What was that, Dude?” Mom and Dad were behind him and didn’t hear what he said.

I let out a sound of exclamation as I looked at the kayak.

“It’s the brand name of the kayak!” I yelped while excitedly pointing at it.

Sure enough, the name “Drifter” was on the side of the kayak.

On the reading level scale, I have no idea where “drifter” lands, but I certainly don’t consider it a standard word that would regularly come across Dude’s path.

He’s READING. He’s seeking out material all the time and absorbing it and wowing us with his knowledge. It’s amazing and beautiful and, as I’ll share later, really annoying at 3:30 in the morning.

Editor’s Note: According To Dude has gone social! The links to follow on Facebook and Twitter are in the sidebar. Blog posts will go up there along with shorter anecdotes/photos that aren’t quite long enough to make the blog!