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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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.

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.

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.”

The past few months…

Autism is many things to different people. It’s a lot like life, I think. In life, there are months that pass without anything of note happening. Months that pass pleasantly. And then there are months that are not so pleasant. Months that are tough. The pendulum swings, and hopefully you have the strength to recognize that it’s going to swing the other direction at some point.

I’ve gone radio silent for a bit because there have been some not so lovely things going on in the world of Dude over the past few months. They aren’t terrible, but they are a departure from our normal, so we’ve been adjusting the best we can.

As I’ve mentioned in previous posts, every once in a while, Dude has outbursts that result in elopement (i.e., he yelps in frustration and then runs as fast as he can with no regard for personal safety). These didn’t start until later in his teen years and happened super infrequently. Perhaps one every few months. The incidents have always been emotional for us because we want to know how to help him avoid getting to the point where he feels the need to bolt to release his frustration/adrenaline, but Dude’s limited expressive language prohibits him from telling us “I’m stressed out because…”, “I feel angry because…”, “I am sad because…”, etc. Within our family, we’ve developed a system of diligently watching his body language and always sticking right next to him in public spaces, so we can help deescalate him before something happens, or intervene immediately when something does.

Since the beginning of the year, these “incidents” have been happening on a regular basis. He had three on his birthday. Three. Luckily there was no running involved because he was inside, but he would have run had the opportunity presented itself.

In the past month, I have witnessed first hand two of the largest meltdowns he has ever had. I’ve watched him screech like he’s in physical pain. I’ve watched him shake like a leaf. I’ve watched him throw all his weight into breaking free of our parents’ grip. Our sweet, easy-going, quick to smile Dude seems to be in a sympathetic nervous system meltdown on a somewhat regular basis.

And the truth is, it hurts me. It hurts that I don’t know what to do to take away his frustration and, by extension, pain. It hurts that when I want to have a nice day with him but discover that it’s a high anxiety day for him, I’m on pins and needles the entire time we’re together, waiting for the meltdown that may or may not come. I would go to ridiculous lengths to ease his mind and body. If I could find a way to turn down the noise of the world around him that didn’t involve wearing noise cancelling headphones, I would do it. If I could hire the Mighty Sound of Maryland (his favorite band on the planet) to follow him around and play marching band music to his heart’s content, I would do it. If I could exclusively speak his special brand of gibberish that almost always makes him giggle, I would. (Side note: Is this what it feels like to be a mother? I feel like this is what it feels like to be a mother.)

So, that’s why I’ve been somewhat vague the past few months when friends ask me, “How’s Dude doing?” Depending on who is asking and how much time I have to chat, I may say, “He’s doing fine. Thanks for asking.” I may say, “We have some behavioral stuff we’re sorting out, but other than that, he’s good.” I may say, “Welllllll, how much time do you have?”

We have some behavioral and medical things we’re looking into to try to understand the root of the issue. We think he’s developed some increased sensory sensitivities, especially to sound, and he simply cannot cope as well as he used to. But we’re exploring multiple theories and aren’t ruling anything out.

It would be super great if all you wonderful people in Dude’s extended network could send positive vibes and prayers our way!

PS – He has still been doing/saying funny things, which I hope to resume posting! I just haven’t felt like writing lately..