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.

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..