One of the things many kids with autism spectrum disorders (ASDs) do is this thing called “scripting.” Scripting can look different, depending on the kid who is doing it.

Version 1: Some kids with ASD have a hard time identifying and explaining their emotions. Instead of saying, “I’m mad,” “I’m scared,” or “I’m sad,” a kid with ASD may quote a line from one of his favorite movies/TV shows/etc. where the character was experiencing that emotion.

For example, if you ask a child who is currently mad/exasperated to explain his emotions, he may respond, “YOU. ARE. A. TOOOOOOOOY.”

If you don’t know that this kid happens to LOVE the movie Toy Story, you will not understand his response. You will think it has absolutely nothing to do with the question regarding his current emotional state.

However, if you have context (and/or have a great memory for movie quotes), you may understand that the child is channeling Woody’s emotional state in that scene. He is extremely angry and frustrated at Buzz.

You follow?

Version 2: Some kids with ASD are anxious individuals. They don’t like it when their environments are unpredictable. When faced with uncertainty, some may script as a means of comforting themselves. The lines and inflections are always the same and predictable. It’s soothing for them to know that they can control this aspect of their environment.

Version 3: Some kids script/quote simply because they like it.

I’d say that Dude follows the pattern of Version 3. He doesn’t compulsively script, but if he hears a word or phrase that reminds him of something from a movie or TV show, you best believe he’s going to finish out that quote. Case in point, my post from this past Tuesday.

You could argue that Dude is this way because his family is this way.. Especially Dad and me.

There isn’t a conversation between us that doesn’t involve some kind of quoting from some movie, TV show, YouTube video, etc. (Favorites: How I Met Your Mother, The Whole Nine Yards, Monty Python and the Holy Grail, Friends, David Blaine’s Street Magic, and Finding Nemo, to name a few.)

Dude-ism #101

I recently discovered a new YouTube video to add to my list of favorite quotable things.

I showed it to my parents and they of course thought it was one of the most adorable videos ever. So now we randomly say, “WHOA!” “We gonna cwack ‘em??” and “Yum um um um um um” a lot. Like embarrassingly a lot.

It didn’t take very long for Dude to catch on.

Earlier this week as they were discussing what to eat for dinner, and for some reason, Dad said, “WHOA!”

Dude was standing behind him and immediately added on, “Yum umumumumumum!”

When you have a loved one with special needs, your family faces a lot of red tape. You meet people in governmental and private organizations that you swear exist for the sole purpose of making your life difficult.

However, as your loved one with special needs makes his journey through life, you will be surprised by the number of people you meet who genuinely care about your child/brother. People who go the extra mile to understand his quirks and make him feel comfortable, who take time out of their busy schedules to do something nice for him, who grow to care for him almost as much as you do.

These are the people who give me hope that Dude and people like him will get by in life just fine; and I am ever so thankful to them for that.

I could recount many stories of old therapists, respite providers, teachers, aides, etc. who have gone the extra mile for Dude. However, there is one story that is fresh in my mind.

Back story #1

As I have mentioned in the past, Dude attends a weekly therapeutic horseback riding session. As he walks and trots around the arena, there are volunteers stationed on either side of him to ensure his safety should he lose his balance and fall.

Back story #2

Lately, Dude has been extremely opinionated about what clothing he wears. He’s constantly going through his closet, picking out shirts, and hanging them up on his bureaus so that he can look at them. Like so:

 

 

 

 

 

 

 

He can get anxious when he wants a particular shirt, but can’t find it because it’s in the wash.

Back story #3

If I had to guess, I would say 90% of Dude’s t-shirts are either Maryland (my alma mater) shirts or Penn State (cousins’ alma mater) ones.

Dude-ism #100 (<– Woot woot!!!)

There is an older gentleman, who I’ll call Joe, who volunteers at the stables where Dude rides. We’re not entirely sure what his affiliation to Penn State is, but we’ve gathered that he is a Penn State fan. Joe always comments on Dude’s PSU shirts.

A couple weeks ago, Dude arrived home from his riding lesson, clutching a brand new “WE ARE.. PENN STATE” t-shirt.

Turns out Joe decided he wanted to add to Dude’s collection!!!

However, Joe was unaware of Dude’s fascination with t-shirts, and made the epic mistake of giving him the gift at the very beginning of his lesson.

Well.. Dude wanted no parts of his lesson after that. While grooming the horse, he kept getting distracted and looking at the shirt, which his aide was holding for him. When he got on the horse, he tried to turn full-around in the saddle so that the shirt was never out of his sight. The aide finally had to go and put the shirt in her car because it was such a source of distraction for Mr. Dude!

When he got home, Dude immediately requested that Mom put the shirt on a hanger. He then scurried upstairs to add it to his bureau collection.

 

I can’t say for sure, but I think Joe’s gift was very much appreciated

 

 

Hi friends!

Sooo it’s been awhile. My life in April was exceedingly busy and I just didn’t have the energy to write. But now it’s May and I’m back!

Back story #1

The weather in the Mid-Atlantic region was gross for most of the last week, but the clouds parted and the sun came out to make for an absolutely beautiful weekend.

I’m one of those people who would be perfectly content if the weather was 77 degrees and sunny with little to no humidity 320 days out of year.

So when that weather finally comes through, I try to be outside constantly. When I’m at my parents’ house, I drag Dude with me on my outdoor escapades.

Dude-ism #99

On Saturday, Dude and I went for a walk at one of the local parks.

As we were walking, I said, “Oh hey, Dude. Uncle Tony texted me the other day. Their pool is open!”

“Pool, yo.” Dude responded. (He has been adding the word “yo” onto the end of EVERYTHING he says lately.)

“Yea I know you really like going to their pool, but I think it’s a bit too early in the season to go swimming.”

“Just keep swimming! Just keep swimming!” Dude sang.

 

I love that my brother loves quoting movies just as much as our dad and I do!

 

What up, blog land? I’ve been on hiatus the past couple weeks. Consequently, I missed both the start of Autism Awareness Month (April 1st) AND World Autism Awareness Day (April 2nd).

Bad autism blogger, bad!

Though I didn’t get around to making a blog post in honor of World Autism Awareness Day, I did post the “Meet Dude” page to my personal Facebook along with this message:

Monday, April 2, 2012 at 9:57am

Today is World Autism Awareness Day!!! Did you know that autism affects 1 in 88 children in the US? Autism is a lifelong diagnosis that requires lifelong support, understanding, and acceptance.If you’re one of those people that likes to put a face and a story to something as big as autism, I encourage you to read about the person who has had the biggest influence on my life trajectory: my brother.

Many of you “liked” that status update. Even more of you chose to click on the link and learn about our family’s version of autism.

Thank you.

Thank you for caring, or educating yourself, or coming here in need of a laugh.

You, dear readers, are my awareness campaign. I don’t need to raise money or run a 5k (both of which I have done) if I can reach you here. And let me tell you, every single time an acquaintance, friend, or best friend from some part of my life sees me and says, “Hey, I read your blog. Your brother is awesome!” it warms my heart. It warms my heart in the homemade chicken soup, Norman Rockwell, sitting by the fireplace kind of way. It solidifies my conviction that Dude has left and will continue to leave an indelible mark in this life.  I say that with the utmost sincerity and certitude because I have seen it happen. I have seen people become better versions of themselves because of him.

When I started writing this blog a year and some months ago, it was mainly for the benefit of my family’s close social network. I wanted to create a central space where I could keep track of Dude’s “isms,” progress, and major milestones.

However, over the past year and some months, it’s like I’m seeing my brother with new eyes. Since I’m constantly on the lookout for “good blog material,” I’m noticing things that escaped my attention or that I took for granted before. His great, big belly laughs. The joy that lights up his face when I repeat his gibberish with the same tone and inflection. The sensitivity of his hearing and ability to pick out and mimic the faintest bird call during a walk in the park or the most obscure harmony in a song.

For the longest time, I took for granted that he’s smart. A different kind of smart. But smart. He is a master of observation. A far cry from the toddler who seemed to have no awareness of or connection to his environment. Sometimes I watch him, sitting at the table, paging through a circular, seemingly oblivious to the conversation going on around him. But there’s a smirk that plays on his lips. A smirk that says, “Just you wait.. I’m going to surprise you.”

And surprise us he does. In my posts over the last few months alone, there has been a pronounced pattern of growth in Dude. He’s initiating more on his own, he’s making more attempts to express himself, he’s trying new things. It’s invigorating. It’s heartening. It’s what I need to read on days when autism is sad and stressful and scary.

Let me be very clear. It’s not my brother’s autism that makes me sad. He has a unique, uncomplicated, and joyful perspective on life that I delight in. The thing that makes me sad is that we live in a society that is woefully unprepared to support children and adults who are like my brother. The rate of those diagnosed with autism spectrum disorders is up to 1 in 88 children. Even with those statistics, states like mine are STILL looking to cut the funding that supports the programs these kids and their families desperately need. That’s what makes me sad and scared on days when I’m vulnerable to being sad and scared.

So on those days, I cling to the progress, to the hilarious memories, to the knowledge that people are better for knowing him, and to the person that my brother has become.

Happy Autism Awareness Month, everyone. Thanks for reading.

Back story #1

As I have mentioned countless times, Dude likes to repeat things. You can read about a past instance here, if you’d like.

Dude-ism #98

I decided to make a trip to my parents’ house this weekend, and was discussing their Friday night plans with them. Dad asked if I wanted to go out with them and their neighborhood friends for happy hour.

“No offense, Dad.” I answered. “But I’d rather babysit for one of the families instead of going out with a bunch of middle-aged folks.”

“YES! Thank you for still considering us middle-aged!” Dad responded, pumping his fists in joy.

Mom called out from the laundry room, “What do you mean ‘consider us middle-aged?’” she asked Dad indignantly. “We ARE middle-aged!”

In the middle of this exchange, Dude wandered into the kitchen. He was paging through a circular, but we knew he was listening to every word like he always does.

“Dear,” Dad answered, “I think it’s safe to say we’re officially over the hump.”

A look of panic spread over his face as soon as the last word escaped his lips.

And rightfully so.

“HUMP, YO!” Dude gleefully proclaimed from the kitchen.

“Oops,” I grinned at Dad.

“Oopsie doopsie!” Dude laughed.

Back story #1

One thing you may not know about Dude is that he is very aware of the order of holidays. It’s like some kind of internal clock goes off. Without fail, he starts talking about Halloween in September. Once Halloween is over, it’s all, “No Thanksgiving. No Thanksgiving.” (To understand Dude’s use of the word “no,” kindly refer to the Dude Language Guide.) Etc. Etc.

Back story #2

When we were younger, our mom was one of those moms who decorated the house from top to bottom to match whatever holiday was approaching. And since we lived in the suburbs and have a front porch, the decorations also included themed flags, windsocks, and sometimes even decals for the front door and windows. Among our flag collection: Back to School, Halloween, Valentine’s Day, St. Patty’s Day, Birthday (goes up whenever there’s a birthday in the house), University of Maryland, Summer theme, Autumn theme, etc

In recent years, Mom has relaxed her decorating craziness a bit.. much to Dude’s chagrin.

Dude-ism #97

This year, as soon as Valentine’s Day had passed, Dude was on Mom like white on rice.

“No St. Patty’s Day flag!” he said to her in mid-February.

“Dude, it will go up before St. Patty’s. I promise you. I just don’t have time today,” Mom responded.

Soon after, our neighbors put up their St. Patty’s Day decorations.

Dude returned to bother mom. “St. Patty’s Day flag. No St. Patty’s Day flag.”

His pestering became a daily activity until about 2 weeks ago. Mom finally dug out the Patty’s Day flag and windsock and ironed them.

“See?” she pointed out to Dude. “I’m getting the St. Patty’s Day flag ready. We’ll put it up this weekend.”

That Sunday, while Dude was upstairs chilling in his room, Dad noticed the windsock and flag lying out. He picked up the windsock and went out on the front porch to hang it.

Mom was sitting in the living room, watching Dad do this, when she heard Dude’s footsteps coming hurriedly down the stairs.

Dude went to the front door, saw Dad hanging the windsock, rushed to the kitchen, grabbed the St. Patty’s Day flag, and was standing impatiently at the door clutching it when Dad turned around.

“St. Patty’s Day flag,” he announced firmly as he handed it to Dad.

Back story #1

Dude gets really antsy when there are misplaced hairs, fuzzies, or crumbs in his vision. As of late, he’s been somewhat obsessive about picking these objects up off of the table, carpet, person’s shirt, sofa, bed, etc. and throwing them away or putting them in what he considers a more appropriate place.

Back story #2

Typically, when Dad eats, he all but licks his plate clean.

Back story #3

When the family goes out to eat, either Mom or Dad always sit next to Dude to help him cut up his food and prompt him to eat.

Dude-ism #96

There are five birthdays in our extended family in March.

Our uncle’s birthday was last week. The family members who were available decided to go out for a nice Italian dinner to celebrate.

Dad was sitting next to Dude and talking with one of our aunts. He had finished eating, but his plate wasn’t as clean as it usually is.

Dude spotted and zeroed in on a crumb on Dad’s plate. He apparently decided that this just wasn’t going to do.

Dad was mid-sentence talking to our aunt when Dude reached over, picked the crumb up off of Dad’s plate, and shoved it in Dad’s mouth.

Hi all!

In honor of today being an awareness day to end derogatory use of the R-word, I thought I’d republish one of my posts from a few months ago.

_________________________________

“The R-Word” 

Originally published August 29, 2011

 

I’ve struggled for some time trying to decide if I wanted to write this post or not.

It’s time.

Something that you may or may not know about me is that I really really really really REALLY dislike our society’s colloquial use of the word “retarded.” I inwardly cringe every time I hear someone say, “That’s retarded,” “You’re so retarded,” “Stop being retarded.”

I never call people out on it because I understand that 99% of you mean no harm whatsoever. You undoubtedly adopted your style of speaking from your peers, and I can honestly say that just about everyone in high school uses the “R” word in some capacity.

But here’s the thing that you might not understand. Your use of the word carries a distinct connotation. And that connotation is “bad,” “other,” “wrong.”

Think of the times you usually use the word “retarded.” It’s when you’re annoyed by someone or something. It’s your way of writing someone or something off. It’s your way of ending the discussion and refusing to see beyond what you already think you know.

Now, please, try to see how this affects someone who has a diagnosis of mental retardation. You are writing them off. You are labeling them “bad,” “other,” “wrong.”

You probably don’t agree with me. “It’s just a word! I don’t mean anything by it! It’s just something I say.”

But don’t you see? Words have power. Even the words that we don’t think mean anything.

With your words, you have the power to label someone with mental retardation, someone who needs a little extra love, a little extra understanding, a little extra compassion as “bad,” “other,” and “wrong.”

In addition to his diagnosis of PDD-NOS, my brother has an accompanying diagnosis of mental retardation.

So you see why I feel like a tiny dagger is pricking my heart every time I hear someone’s flippant use of the “R” word.

Does Dude understand that 5 x 6 = 30? I don’t know for sure, but I don’t think he does.

However, he can kick your butt in harmonizing, he LOVES going to Maryland football and basketball games, he loves the beach, he has a memory like an elephant when it comes to quoting movies, and he loves his family very much.

How are any of those things “bad,” “other,” or “wrong?”

————–

I wish I could say that I am one of those wonderful typical siblings who never used the “R” word. Who was able to see the big picture. I’m not. And I am ashamed by that. I used it (I’d like to think sparingly) in high school because that’s how my friends talked and, like any teenager, I wanted to fit in.

By college, I had more or less eliminated it from my vocabulary. However, I distinctly remember the last time that word escaped my lips. Actually, I didn’t even speak it. I typed it out while talking to a friend online in October 2007 while sitting at my desk in my dorm room in Hagerstown Hall.

As soon as I typed it. I regretted it. I don’t know what prompted me to use that word, a word I hadn’t used for so long. I actually remember quickly typing to my friend, “I’m sorry. I don’t know why I just said that.”

I am so thankful I was talking to this particular person. Because he called me out on it. Instead of saying, “Oh lol. No biggie,” he said, “Yea I’m really surprised you said that. I didn’t expect that from you of all people, Julianne.”

It was one of those moments. Like the moment you realize you are absolutely done with a bad relationship or when you decide you’ve had your last cigarette.

————–

Please. Maybe this can be your moment. Maybe not.

I probably won’t call you out if you use it in front of me. Unless of course you are directing your comments at my brother or any other person with a mental or developmental disability, in which case I reserve the right to punch you in the face.

I just thought that having some extra knowledge may inform your decisions going forward.

I just thought you should know what we in the special needs community feel when you use words that are “just” words and don’t “mean” anything.

I’m pretty sure I have mentioned how Dude isn’t the world’s biggest eater. He eats an extremely limited variety of food; and what he does eat, he eats in small quantities.

It’s a fairly common characteristic of individuals on the autism spectrum. Some people have extreme sensitivities to the texture of foods, while others simply demand sameness in their every day routines (i.e., if they don’t get a bowl of Fruit Loops at 8am, they’re going to have a fit).

Dude doesn’t have tantrums when we deviate from his normal eating pattern, but he pretty much refuses to put any food in his mouth that doesn’t look familiar. (Remind me to tell the hot roast beef sandwich story at some point.)

For many years now, an interesting phenomena takes place in the winter months. Dude’s already small appetite greatly diminishes. It takes him longer and longer to eat simple meals. The kid made a peanut butter and jelly sandwich last almost two hours once. (Sometimes I am prone to exaggeration, but my parents can attest to the truth of that statement.) 

Now normally, the slow eating would be a nuisance and nothing else, however, Dude started dropping weight. Several years ago, he lost over 12lbs over the course of maybe two months. And let me tell you, this kid does not have 12lbs to lose.

Our family frantically tried to figure out what was causing him to be so disinterested in food. A gastroenterologist finally diagnosed Dude with Gastroesophageal Reflux Disorder (GERD). Gross sounding, right?

Anyways, to make a long story short, Dude got put on Prilosec and that seemed to help the problem.

However, this year he dropped 7lbs over the course of a few months and the Prilosec seemed to do nothing to help him. He was burping and gagging every time he sat down for a meal. The gastroenterologist ordered an endoscopy to see what was going on.

And the endoscopy revealed…. NOTHING.

No inflammation of the esophagus, no evidence of a gluten intolerance or Celiac disease (which we had suspected), etc.

We were simultaneously relieved and annoyed. There HAS to be a reason Dude goes through this ordeal with eating every year when the weather turns cold!

The doctor didn’t have any additional hypotheses for us.

However, he did suggest a daily teaspoon of an appetite stimulant. Which brings me to my Dude-ism of the day.

Dude-ism #95

The first day that Mom gave Dude the appetite stimulant was on a Friday several weeks ago. Fridays are his “date” nights, as we like to call them. He generally goes out to dinner and a movie with a respite person. Sometimes they go to some of his favorite stores, and sometimes they go bowling.

At the end of the night, Mom and Dad like to talk to whoever takes Dude out and ask about what they did, how he ate, how did he like the movie, etc.

According to the young lady, Dude scarfed down his dinner at Wendy’s (chicken nuggets and french fries, as always) and then tried to eat some of hers.

Next, he ate an entire “small” bag of popcorn while walking around Home Depot.

When they got home, Mom had a bag of cookies and other goodies prepared for the young lady since it was the Friday just after Valentine’s Day. She gave the bag to Dude and asked him to pass it along to his buddy. Instead of doing that, he tried to open the bag to get at the cookies for himself!

When Mom made it clear that those cookies were not for him, his eyes fell on the container that she always keeps fresh baked chocolate chip cookies in. He picked it up and handed it to her.

“Cookies in a cup, please,” Dude asked.

So Dude got 3 cookies in a cup.

Which he finished before he even got upstairs.

So he circled back and asked for pretzels in a cup.

He finished the pretzels within 5 minutes of going upstairs and came back down again for more.

 

So in conclusion, in case anyone was wondering, appetite stimulants work!

There was one post where I mentioned Dude’s take on dogs.

To orient yourself, please read it here. Take your time, I’ll wait.

I often read about the amazing connection people with autism have with animals, especially dogs.

Well, Dude must have missed the memo.

He HATES dogs.

Let me clarify. The conclusion that we’ve come to is that Dude doesn’t like dogs that bark. Which is a shame, because that’s what dogs do.

Our parents would love to get another dog some day, but they know it isn’t in the cards. Dude would be on edge in his own house. That’s not fair to him.

Dude-ism #94

A couple weeks ago, our parents had a meeting up at Dude’s program during the evening hours. They didn’t want to have to take him, so they asked my aunt and uncle if they would mind watching Mr. Dude at their house for a few hours.

This particular aunt and uncle recently lost their beloved 12 year old Bijon-Shih Tzu mix, Shelby. They tried to fight the urge to go out and get another dog, but they lasted only a month before they brought their new puppy, Baxter, home.

When Dad walked into our aunt and uncle’s house with Dude, the puppy immediately started excitedly barking. Dude was having none of it.

“No home yet!” he stated, beadily eyeing little Baxter. (To understand Dude’s use of the word “no,” kindly refer to the Dude Language Guide.)

Dad replied, “You’re going to hang out here with your aunt and uncle while Mom and I go to a meeting. Julianne will be here soon to pick you up.” (It just so happened that I was coming back to the suburbs that night for a weekend visit. I had offered to pick up Dude on my way home.)

Dude didn’t like Dad’s explanation and tried to follow him out the front door when he went to leave.

No more than 20 minutes later, I showed up.

As soon as I walked in the door, Dude spotted me.

“No home yet!” he said as he started to head for the door.

“Wait a second, bud,” I answered. “I haven’t seen Aunt Marie and Uncle Mike in a while. Give me a second to talk to them.”

A second turned into an hour and a half.

About five minutes after I got there, they offered to share some of their chicken pot pie with me for dinner.

I looked at a tense Dude and looked at the chicken pot pie. The dinner won out. Who am I to turn down a delicious meal that I hardly ever get to eat?!

“Well, maybe we’ll stay just a little bit longer,” I answered as the chicken pot pie went into the oven.

I could practically feel the exasperation radiating off of Mr. Dude as he saw me take off my coat and sit down.

“No home yet. No home yet,” he said, staring me down. The puppy was quietly napping now behind the kitchen table, but Dude kept craning his neck to keep little Baxter in his sights. He didn’t want to be surprised by any stealth barking attacks.

We managed to coax him into the recliner in the family room to watch some of the Duke vs. FSU game. Dude sat there, morosely staring at me as I ate dinner. (By the way, I should say that Dude had eaten dinner before he arrived at our aunt and uncle’s house. We weren’t denying him food!)

As soon as I was finished eating, Dude made a beeline for his coat.

“Goodbyyyyyye,” he said in his sing-songy voice.

Once we were in the car, Dude put his latest favorite CD in the player and let his body relax.