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.”

011

Dear Phillies, Dude will never abandon you

Last weekend, our family went to an event for families who have loved ones on the autism spectrum. It was set up like a carnival and had lots of interactive things for people of all ages to try.

One of the activities Dude tried was a station where you could create your own avatar. You know those Xbox Kinect games like “Just Dance”? You pick a character, move around, and the motion sensors from the gaming system pick up your movements and translate them to the character on the screen. It’s pretty neat technology.

At this particular avatar station, you got to select your background, your character, and the speed of your voice since there was a voice recording/modulation component.

There were about 15 backgrounds to choose from. Without hesitation, Dude selected Citizens Bank Park.

For his character, he chose bacon. Because bacon.

And finally, Dude chose the slowest, lowest voice setting because slow-mo things never fail to make him laugh.

When it was Dude’s turn to step into the station, the people running it told us he first had to do the recording of whatever it was he wanted to say.

Our parents and I exchanged glances as I guided Dude to the mic. “What should we get him to say?” we asked each other.

The thing that’s sometimes frustrating about Dude is that we know he can do something, but because of his mood, the sensory environment, the alignment of the planets, etc., he doesn’t, and by consequence, people who don’t know him that well underestimate his abilities. I hate it when people underestimate him as soon as they hear the word “autism.” It’s one of my pet peeves.

Even though Dude is perfectly capable of speaking in short phrases and saying things that make him giggle, we were convinced he wasn’t going to perform in the somewhat overwhelming environment.

In the midst of trying to decide what to get him to say, Dude, ignoring us and completely understanding what he was supposed to do, bent down towards the mic and, without hesitation, chanted, “Let’s Go Phillies!!!” And then switched his voice and said in slow-mo, “Let’s go Phiiiilllllllll.” (He has a habit of dropping off the ends of words.)

Mom, Dad, and I looked at each other and then at Dude, shocked and delighted. Dude looked at us like, “What? Of course I’m cheering for my team. Duh, guys.”

He then recorded the movements for his avatar (with some help from me), and now we have a video of a piece of bacon waving its arms around in Citizens Bank Park chanting, “Let’s Go Phillies!”

Bonus story: Turns out Dude is really good at spelling. There was an iPad game/app that showed you a photo and blank circles for how many letters were in the word. You had to decide what the word was, and then pick up the correct letters and put them in front of the iPad to spell the word. We knew Dude can read sight words really well, but he was nailing the spelling with minimal assistance from us. Go Dude!

Watching the avatar video before selecting his scene and character.

Watching the avatar video before selecting his scene and character.

This spelling stuff is easy, guys.

This spelling stuff is easy, guys.

This is not a real post

‘Sup nerds? Hope y’all don’t mind, but we’re taking a break from our regularly scheduled programming. And by “regularly scheduled,” I mean “sporadic” since the last time I posted here was November. Oops.

Today’s post is going to be stream of consciousness word vomit not particularly centered on Dude. Enjoy.

Dude got his wisdom teeth removed two weeks before Christmas. He only had three, but one was impacted and had grown sideways in his jaw, which I’m guessing was moderately uncomfortable and thereby really frustrating for him because he can’t say, “Hey guys, OW!” He had some moderate swelling, but otherwise recovered beautifully.

Things that also happened two weeks before Christmas: our Pop Pop got routine bloodwork done at a routine physical with his primary care doctor and it was discovered he was in renal failure. SURPRISE. So that led to a week long stay in the hospital. Luckily, he is now doing much better.

I was not feeling the holiday season this year. I know I’ve written that the past few years, but it took on a whole other level this year. I was busy at work and then there was family stuff and I just didn’t feel like putting any energy towards Christmas. I barely pulled it together to buy gifts (me, Miss Always Prepared At Least Two Weeks Ahead of Deadlines), the only Christmas movie I halfheartedly watched prior to the holiday was Elf, and we didn’t even decorate our apartment.

My reward to myself for making it through the holiday was to do NOTHING for New Year’s. It. Was. Glorious. Normally, my New Year’s Eve involves buying a ticket to some open bar event in some East Coast city and then trying to keep track of my friends while avoiding strangers puking on me or falling on me (one year, a random large man literally fell like a tree onto my friend, knocking them both to the ground). This year, I politely declined all invitations, cooked myself and my one roommate an awesome dinner, watched When Harry Met Sally (picked it out because it’s a good movie, only realized the New Year’s relevancy once we started watching), thought about going up on the roof to see the fireworks at midnight but decided it was too cold, and was in bed by 12:05am. I woke up the next morning feeling well rested, and went to my first yoga class in over a year. I left feeling limber and refreshed and ready for 2015. I cannot over-emphasize how glorious it all was.

palm tree

Taken from my lounge chair on the beach while I was sipping a frozen tropical drink.

Shortly after the new year, a few college friends and I went to an all inclusive resort in the Dominican Republic. As some of you may recall, I hate winter. I function fine when it’s in the 40s and even the 30s, but last winter broke me. It was some time in February 2014, on the 15th day in a row where the high was only in the upper teens, that I snapped and swore up and down that I would go somewhere warm in Winter 2015. It was one of the best ideas I’ve had in my life. It was 83 and sunny every single day. At home, it was 12 degrees and gray. I came back rocking a tan and feeling very refreshed and ready to tackle the rest of the winter. I wish I had the money to make that trip an annual thing because it was perfect.

I am a dog person. I have a lot of friends who are dog people. Consequently, they repost shelter dogs in need of adoption on Facebook somewhat regularly. This is dangerous for me because my need to rescue and love a shelter dog is at an all time high right now. The only thing that’s keeping me from making a rash decision is the fact I don’t have the money or the space for a 35+lb dog. After the last family dog died, I said I would probably never get another animal because I get too heartbroken when they die. Apparently it takes me 8 years to forget the hurt and think another animal is a good idea.

The final season of Parks and Recreation is airing and they are KILLING IT. I can’t remember the last time I’ve consistently laughed out loud during a TV show, which makes me that much sadder that it’s ending.. But at least they’re going out on a high note! Side note: If anyone wants to get me the Complete Series of Parks and Recreation on DVD for my birthday in April, I’d be much obliged ;). Side side note: If you want to fall down a Parks and Rec YouTube hole, check out The Great Parks and Rec Clip War of 2014.

Also on the list of things I’m extremely excited for: Pitch Perfect 2. The trailers have been on point and I will be sad all day if they show all the funny stuff in the trailers and the movie stinks. I don’t think that’s likely, but you never know.

I’m currently hunkered down being all responsible with work and school and what not, which has me feeling a bit like a caged animal. Come the beginning of May, I’m gonna be all like FREEEEEDOOOMMMMM and think that any trip/excursion/activity sounds like a fan-freaking-tastic idea. I may or may not have already booked a flight to visit a friend down South. And I may or may not really want to drive up to Maine to go hiking and camping. So if you’ve been biding your time waiting for the right moment to pitch an idea to me, now is the time to do it since I will go for just about anything.

And finally, Happy Galentine’s Day to all the smart, fierce, caring women in my life!!! I’m happy you exist.

How not to bowl

Bowling has always been a favorite thing of Dude’s. Back in the day, we would videotape the PBA tournament on ESPN for him every single Sunday. Dude watched the tapes on repeat. For a while there, I could name the top 20 bowlers on the PBA tour off the top of my head.. Not a skill I ever thought I would have.

Since Dude moved out, he joined a Special Olmypics bowling league. We thought he enjoyed it, but it recently came to our parents’ attention that Dude has on several occasions refused to get out of the car to go participate. Based on some anecdotes, it sounds like the place is a sensory nightmare, and since Dude can’t say, “Hey, I physically cannot handle this,” the best way he communicates it is by refusing to budge from the sensory safety of the car.

This past Sunday, Mom and Dad decided they would take Dude to a quieter bowling alley so they could observe his behaviors and figure out if they could help problem solve the Special Olympics issue.

The first game passed without incident. And then.. Then the second game started.

(Sadly, I was not present for this, but I made my parents describe it to me in painstaking detail, so hopefully I do it justice.)

At the beginning of the second game, Dude is standing near the ball return with his arms folded across his chest. Dad encourages him to pick up his ball and get the game started. Dude doesn’t move. Dad lightly tugs on his arm. Dude doesn’t move.

Without warning, Dude (in a fit of rage–reasons unknown) springs into action. He lunges for the closest bowling ball, which isn’t his and is 2-4lbs heavier than his typical one. He runs toward the lane, stops at the foul line, and HURLS the ball down the lane in a perfectly executed basketball chest pass (aka sooo not how you bowl). The bowling ball flies about 8 feet down the lane before it even hits the ground.

Keep in mind that Dude has ridiculously low muscle tone, which means that there is hardly ever any force or oomph to his movements, so a 10lb bowling ball flying 8 feet through the air is pretty darn impressive.

But Dude isn’t done.

He decides to take off running down the lane AFTER the bowling ball.

The thing about bowling lanes? They’re slippery.

So Dude is slipping and sliding down the alley, and Dad takes off after him. Our 6’4″ father demonstrates something akin to a tightrope walker crossed with a first time ice skater and manages to catch Dude before he dives headfirst into the pins at the end of the lane.

Mom is standing next to the ball return, mouth agape, shoulders slacking, arms hanging loosely by her sides with her palms turned out in supplication to the universe. She manages to pull herself together enough to turn toward the employee counter and cry, “Can someone HELP US?!”

Two little boys from a birthday party a few lanes away abandon their game and watch the scene unfold with wide eyes.

Dad catches up with Dude about 6 feet from the pins and has a firm grasp on his arm. Dude is bent over at the waist, staring into the pins where the ball has since disappeared, thinking who knows what.

The teenager from behind the counter slowly meanders up to Mom and comes to a stop next to her.

He clears his throat, turns toward our shell-shocked mother, and says, “I’m really impressed. Other people never get that far.”

What can I say? We like to keep it interesting.

Manha Manha

Whenever our family goes on trips, Dude and I inevitably have to share a bed. This would be fine except for a few facts:

  1. We are both grown adults and hotel beds aren’t particularly large.
  2. Dude wakes up during the night at least once and either falls back asleep immediately or stays awake for multiple hours.
  3. I am a light-ish sleeper.
  4. Especially when I’m in any place that isn’t my own bedroom.
  5. I become a tall two-year-old when I am sleep deprived.

When we last left off on our Maryland adventure, we were on our way to that great state and Dude was jumping out of his skin excited.

As I mentioned in my last post, we hate noon games. The reason we hate noon games is because the band begins rehearsal four hours prior to kickoff. And Dude needs to see rehearsal in its entirety. Which means we need to be on campus by 8am at the very latest. Which means we need to wake up at 5:30am so 3/4 of the family can shower. (Yours truly is the only smart one who showers at night.)

On Friday night, everyone got in bed around 10:30-11pm with the 5:30am wake up time in mind. Dude passed out immediately. Our parents fell asleep quickly. I proceeded to lay there with my eyes wide open. I was finally starting to get sleepy at 12:30am when Dude popped out of bed and rushed over to where his Maryland jersey was hanging to examine it.

Dude has never attempted to leave a hotel room before, but my brain subconsciously decided it wasn’t taking any chances. It took about 10 minutes to convince him to get back in bed, and then he laid there humming until about 4-4:30am. Or at least that’s when I finally fell asleep.

Fell asleep at 4:30am. Alarm set for 5:30am. Tall two-year-old when sleep deprived.

Luckily, I was so excited to see friends that adrenaline carried me through Saturday. The day was beautiful, the Terps won, and Dude was the happiest camper you ever did see. (He had a few freak outs, but they were of the IHAVESOMANYHAPPYEMOTIONSANDIDONTKNOWHOWTOHANDLETHEM variety rather than the THISISTHEWORSTGETMEOUTOFHERE variety.)

At the end of the game, my friends were all, “Let’s go out in DC tonight!” And I was all, “HAHA no.”

I’m exhausted. Dude’s exhausted. Everyone is going to sleep well. It’s going to be great.

At 3:28am I was awoken by Dude shooting out of bed and running across the room to the closet area, presumably looking for his jersey.

Oh heeeeeeccckkk no, I thought. (Ok, let’s be real. “Heck” wasn’t the word I thought.)

“Get back in bed,” I hissed.

Dude wandered back over to the bed and stood on his side wringing his hands.

“Get back in bed,” I repeated.

He finally did. At 4:00am.

And this is where my life gets hilarious.

Dude has a habit of humming to himself when he’s in bed and not quite asleep. It’s his comfort thing.

When he laid down, he hummed nothing notes for a few seconds. Then he began singing,

“Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo dooooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.

Doo doooo doo doo doo. Phenomenon. Doo doo doo doo. Phenomenon.”

That went on for 30 minutes.

It’s moments like these, when you’re in a hotel room in Maryland and it’s 4am and you’re so tired and your brother is singing a song from The Muppets Show that you’re like, “HOW IS THIS MY LIFE RIGHT NOW?!?”

Editor’s note: It’s the song “Manha Manha” from The Muppets Show. But for some reason, Dude almost always says “phenomenon” instead of “Manha manha.”

Traffic Trouble

This past weekend was the annual family trip down to the University of Maryland to attend a football game. Otherwise known to Dude as The-Best-Weekend-Of-The-Entire-Year. (And just to be clear, I’m the one who attended Maryland. Not him.)

The reason the annual trip is Dude’s favorite is because of his deep and abiding love for the Mighty Sound of Maryland. (If you type “Mighty Sound…” or “marching band” into the search bar on this blog, you will find countless entries that attest to this fact.)

We headed down to Maryland on Friday afternoon since we had to get an early start on the festivities on Saturday. (Noon games are the bane of our existence.)

Our plan was to get on the highway by 3:30pm at the latest, so naturally we didn’t get underway till 4:30pm. I-95 during Friday rush hour. Lovely.

The second I got in the car, Dude began his litany of Maryland-isms in his sing-songy voice. “All gone for the marching band. All gone for the marching band. All gone! Soon we go to Maryland. Maryland football game. Maryland marching band. All gone for the practice field. All gone. Soon we go to the practice field.. to see the Mighty Sound of Maryland! All gone for the practice field!” (This went on for three hours. No exaggeration.)

Excitement was radiating off of his skin. He wanted to get to Maryland to see the marching band. Now.

He must have been frustrated with our slow pace because at some point during our crawl along 95, Dude suddenly sang,

“Noooobody knows the trouble I’ve seeeeen. Nooobody knows my sorrow.”

Dad almost ran off the road from laughing so hard.

#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.