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..

Click bait, autism scapegoating, and women’s issues

Hold on to your hats, kids. We’re going to cover a lot of ground today.

Last week, I snarled out loud when my Google Alerts for the day arrived. At the very top of my “autism” alert was the title “Autism scientifically linked to mass murder.” I quickly looked at the next line to see which publishing entity was responsible. I guessed it was an alternative website.

Nope. It was The Washington Post. A generally well-regarded publication.

I clicked on the link and began to feverishly read the article. The full title was “Study: ‘Significant’ statistical link between mass murder and autism, brain injury.”

As I plowed through the text, certain passages stuck out at me:

new study in the journal Aggression and Violent Behavior will likely fuel the debate even more. It found some mass murderers and serial killers have something in common: autism and head injury.

SOME mass murderers.

Researchers call it the first review of published accounts of what causes people to commit mass murder.

Published accounts. AKA anecdotal evidence. AKA info that was collected in a fragmented manner from a variety of people who may or may not have known the perpetrator well AND/OR info that the researchers collected from decades-old newspaper articles.

And then, SEVEN PARAGRAPHS IN, we get to this:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

SEVEN PARAGRAPHS IN. Anyone who works in news media nowadays knows that people have limited attention spans. Very rarely do people make it seven paragraphs in. They scan the first few, and if the info matches the article title, they’re satisfied. Because of this, articles are titled as provocatively as possible to elicit the most clicks.

But these editors can’t be so naive as to think that everyone will click so they can understand more. Many people will not click the link to read more. They’ll read the link and move on to the next thing. They’ll have made the connection that autism = mass murder because they didn’t bother to get to the nuances of the article.

That article is click bait. It is yellow journalism. It is irresponsible reporting. You’re not only maligning a subset of the population, you’re disrespecting ALL of your readers. Yellow journalism at the conclusion of the 19th Century was one thing. Content wasn’t as easy to access then. There was more lag time between news-making events and the actual reporting.

EVERYONE can access media content today. We have smart phones. We have 24 hour news networks. We have social media where content is shared at the speed of light. Given this environment, you’d think respected publications such as The Washington Post would exercise the utmost care and caution in its reporting.

Which brings me to my next point.

It has gotten to the point that every time I hear that a young white male went on a shooting rampage, I sigh and wait. Wait for the first news article to appear claiming the suspect was diagnosed with Asperger’s or autism.

Why else would a white male, the definition of privilege (according to society), do something so terrible? It’s gotta be that pesky autism. That “brain disease” that “prevents people from feeling any kind of empathy.” By the way, if you believe that to be true, I challenge you to read blogs written by individuals on the spectrum, or blogs of parents who really truly get their kids. It ain’t a lack of empathy on their part. It’s us not recognizing empathy when it’s displayed in ways that our brains don’t understand.

In the case of the UCSB shooting this past weekend, the Asperger’s finger pointing happened faster than ever before. The very first article in my Twitter feed that alerted me to the shooting said that the perpetrator had been diagnosed with Asperger’s. As if that explained everything.

I believe that diagnosis info has since been retracted. I think the statement was clarified to say that the parents wondered if he might have Asperger’s, but he was never in fact diagnosed.

I’ve skimmed some articles referencing this manifesto and the multitude of YouTube videos left behind (I refuse to read/watch them first-hand, which is what the kid would have wanted). It seems clear to me that there were a lot of issues that the perpetrator was dealing with. Particularly issues related to women and what they owe men who give them attention.

Which brings me to my next point.

I didn’t quite understand what this #YesAllWomen Twitter trend was. It seems it started because someone drew a connection between the suspect’s ranting and misogynistic culture that exists in America.

Before I go any further, I must say that there are good, decent, wonderful men who are great allies to women. As I saw in one tweet, “Not ALL men harass women. But ALL women have, at some point, been harassed by men. Food for thought. #YesAllWomen”

As I read through the tweets of women detailing unwanted advances, fear of personal safety, and more, I agreed in my head.

“Yep, experienced that.” “Yep, that’s happened too.” “Yea, I’ve had to use that line to get a guy to go away.” “Ooh that’s a clever idea for when I’m walking home after dark.”

A few years ago, I was out at a dance bar with a few of my cousins. We took a break from dancing so they could go grab another round. I guarded the somewhat less busy spot we had snagged against the wall. There was a ledge that went along the entire bar so people could rest their drinks there. Before I even knew what was happening, a guy came up and grabbed the ledge on either side of my body, effectively trapping me and forcing me to look straight into his face, which was approximately four inches away from mine. He tried to squash his hips into mine.. the act that passes for dancing nowadays.

“No thank you,” I yelled over the music.

“You need somebody to dance with,” he responded as he stiffened his grip on the ledge, ensuring that I couldn’t make an easy escape.

I decided to change tactics. “I have a boyfriend,” I yelled again.

“Where is he?” asked the stranger as he continued to dance on me.

“In Maryland,” I responded as I openly grimaced and tried to melt myself against the wall as much as possible.

“Well he isn’t here, is he?” the guy leaned forward and whispered disgustingly in my ear.

At that, I got pissed off. “I said NO!” I shoved him and made a run for the bar.

It should be noted that I was wearing jeans, boots, and a cute top that was not particularly tight and didn’t show cleavage. The fact that I need to type this as a clarifying statement at all says something about the kinds of arguments that are made when women complain about specific men’s actions.

Some of you might say, “You were at a dance bar, what did you expect?”

That is a slippery slope, my friends.

That is a step or two away from, “Look at what she’s wearing, what did she expect?”

Or from, “She let him buy her drinks all night, what did she expect?”

Or how about, “She walked home by herself after dark, what did she expect?”

I expect that when I say, “No, thank you,” that you are man enough to respect me and my decision and walk away.

I owe you nothing. You have done nothing to earn my respect, let alone my affection.

It’s funny in a not so funny way that within the past year or so, I’ve really started to care about women’s issues. I’ve always cared about the big ones, but I’ve finally started to come around to the day to day things. Like why is it ok for people to question me about my relationship status on a fairly regular basis? (You’re closer to 30 than you are to 20, tick tock!) And why is it ok to pity me because I don’t have a significant other? (Pity is for people who feel sorry for themselves. Sorry to disappoint you, but that ain’t me.) Why is it ok to make assumptions about my childbearing plans? Both men and women make these comments and assumptions. And, it’s worth noting, both women AND men are on the receiving end of them. It is not a uniquely female issue, though I think it’s more prevalent for us.

I find myself thinking about all these things I’ve never thought about before, and to be honest, it makes having conversations with friends and colleagues really hard sometimes. Because I don’t want to say the cliche thing that a young professional female expects to hear and is likely tired of hearing. I don’t want to make assumptions. I don’t want to judge (admittedly, this is exceedingly difficult for me. I’m trying so so so so hard to change this about myself, but I’m a flawed person, so it’s a struggle).

I want people to respect me and my decisions as I forge my path in life. Because I am a person. I have a right to say yes and a right to say no regardless of my gender or the situation. The same goes for other human beings, too.

Dude’s music index–have you made the list?

At a meeting at Dude’s program last month, we learned that he has “indexed” most of the staff members. Apparently he has specific songs that he associates with each individual. He grins and starts singing the song when he encounters the specific staffer, encouraging them to join in.

The site director rattled off the different songs for each person. As she went through the list, I thought of other instances where Dude assigned songs to specific people.

Our oldest cousin = You’ve Got the Love by Florence and The Machine

Our second oldest cousin = The Hamster Dance

There was a therapist/respite person back in the day that he associated with music from Rent because that was about the only thing she played while driving around.

There are tons of other people that I’m probably forgetting. Also, I don’t think he has a specific song tied to our parents or me. He knows he can throw out pretty much any tune and we’ll be on the same page as him.

Anyway, when I heard this, I immediately thought of “Autism’s First Child,” an article that appeared in The Atlantic back in August 2010. The authors check in on Donald Triplett, aged 77, who was one of the 11 case studies featured in Dr. Leo Kanner’s first description of autistic disorder back in the 1940s. The article is long, but worth a read if you’re interested. There’s one particular segment that stuck out to me:

“He [Donald] even has a habit of assigning numbers to people he encounters, a sort of internal indexing system. An old acquaintance named Buddy Lovett, who resides one town over, in Morton, Mississippi, told us that Donald had assigned him the number 333 sometime in the late 1950s. Though he had not seen Donald for several years, he urged, with a hint of mischief, “Next time you see him, go ahead: ask him what my number is.”

Indeed, the next day Donald nailed Lovett’s number almost before hearing the end of the question. We ran this test several times, presenting the names of people all over Forest who had told us of being “numbered” over the years. Donald recalled every one, without hang or hiccup, though he can’t explain the underlying system. The numbers just come to him, he says, and then stay forever.

Likewise, those who receive a Donald Number seem to remember it for the rest of their lives. An indelible distinction, a recognition they’ll never have to share—it may feel akin to an honor.”

Dude’s musical indexing system is kind of similar to Donald’s numbering system. However, Dude’s seems to be a bit easier to explain. The chosen song tends to be something that was playing when he was having fun with the person, or a song that someone shared with him or sung to him.

But I think it also says something about the power of music. Think of how much music ties to our memories! When I hear Spice Girls, I think of the full year my girl cousins and I spent fighting over who got to be Baby Spice. When I hear the “1812 Overture,” I think of the homecoming game in college when the band was on the field in the pouring rain and the cannon blasts intermingled with the loud claps of thunder. When I hear “Georgia on My Mind,” I think of one of my best friends from high school.

Music is the way Dude makes sense of his world. It’s pretty neat when people meet him halfway and use his affinity to connect with him :)