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Beautiful Monkey-Butt

Today, I opened our son’s door to find a winter wonderland.

He’s been more impulsive of late; we aren’t sure yet what’s going on.

Last night at Boy Scouts, his sometimes-nemesis-sometimes-partner-in-crime asked for water. Our boy complied with the request by dumping water on the kid’s head.

When Hubby asked him why he thought it was a good idea, he shrugged.

I didn’t think it was a good idea. I just thought of it, so I did it.

Reasons for his choices remain elusive, apparently even to him.

“I wanted to do it at the time but now I see it was a bad choice,” or “I don’t know why I did it,” are frequent answers when we question him after the fact.

His befuddlement appears legitimate.

Since Dad passed away, wild swings of his behavior have become the norm. One moment, he’s explaining detailed reasons for the failure of a World War II campaign. The next, he’s walking from the kitchen to the living room to deposit orange peels behind the couch because the trash can (in the kitchen) was too far away.

After he gets in trouble, he’s almost perfect for hours and incredibly logical about accepting consequences for his behavior. He’ll work with diligent focus on math, chores, apology notes or other remedial requirements.

If only he’d act as though he’d been in trouble BEFORE getting in trouble, he’d almost never be in trouble.

So.

Back to the beautiful snowy landscape.

In his room.

I opened the bedroom door to deposit some of his belongings and stopped, sniffing in amazement.

My young man’s bedroom actually smelled…not like his bedroom usually stinks smells.

Then I turned on the light.

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The pictures don’t even begin to accurately portray the amount of powder on EVERY SURFACE of his room.

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This summer, before Scout camp, I bought him a container of Anti Monkey Butt powder (yes, it’s really a thing) as recommended by the troop leaders. It resided in the top drawer of his dresser for almost an entire year.

And then.

This morning, it called his name. 

He said he just wanted to see what everything would look like with powder all over it.

Thought it might be pretty.

Turns out, it definitely smelled pretty.

It was EVERYwhere.

I can imagine his delight as the plastic can puffed white flakes into the air. He probably danced through the clouds as they fell (a theory supported by the powder Hubby brushed off the kid’s shirt this morning).

As usual, he attempted no argument when I handed down the sentence: vacuum and wipe every surface, shake bedding over the porch rail, put all belongings in their proper places.

He even put the sheets back on his bed without asking me for help—and I didn’t even tell him to do that.

Unbelievable.

Tomorrow, his in-home counselor will help us try to work with him through his thought process. I’m just hoping we can find a solution, because right now it feels like every time we turn around it’s “something else.”

So far, most of his urges have led to largely harmless actions, but we just never know what he’s going to do next.

It’s like he’s suddenly five. Or maybe three.

He carries chunks of concrete into the bathroom, hides yogurt wrappers and banana peels in his room (doubly odd since we reinforce that he can have healthy food any time he wants it), climbs things, wanders off, misbehaves at school hoping for a suspension (because then he can come home) and basically does whatever pops into his head.

A friend told me that when his spectrum son edged into puberty, his Autism went from minor inconvenience to a full-blown life-alteration. We’re not sure if this regression is due to the Autism, due to the grief, due to a need for a change in medication, or…

We just don’t know. And it’s frustrating. 

But, on the bright side—the side to which I cling in desperation—the pattern of the powder was very pretty

And even better: his room no longer smells like a baboon’s derriere. 

 

Well That’s FantIstic

I perched on a cold plastic chair, waiting my turn for a haircut, when he sauntered through the door, tall and confident.

Ex-military was my first guess. Who else shows up to a hair salon with quarter-inch hair?

I couldn’t tear my eyes away from his broad chest. No question in my mind…definitely military. Eyes riveted, I nudged Hubby.

“Can I get one like that?”

He nodded. “Sure, why not?”

He’s so accommodating.

Then I asked the guy where he got his t-shirt, sporting a NATO/Military alphabet message.

And dissolved into giggles.

 

After I regained my composure, Hubby and I began deciphering the cipher.

  • Whoa, That’s Fascinating
  • We’re Totally Fabulous
  • Why Tell Fibs?
  • What Terrific Fannies

And yes, I know the phrase really means something less than appropriate, so I’ll probably never wear it…but it still just tickles me every time I see it.

My favorite:

Well, THAT’S Fantastic.

(With just a hint of sarcasm.)

***

Yesterday, as I helped our son with his homework, I pointed out a needed correction. He burst into tears. Unsure of the source (since the mistake was incredibly minor), I began to wrap my arms around him.

He pushed my arms away. Not harsh, but definitely firm.

“I just want to be aloooooooooooooooooooooooooooooooooooooooone,” he wailed, exploding out of his seat at the kitchen table.

Whiskey Tango Foxtrot???

His moodiness is an on-again, off-again occurrence in the afternoons. He takes medication to help him focus at school, and to this point I’ve always assumed it stems from the meds wearing off. But before, I’ve always seen an obvious trigger (usually after a rough school day).

This was my first epiphany that the reaction might not be related to his dose.

(For more about the use of medication, read here.)

“Okay…I won’t hug you. How about you just lean against me until you calm down?”

Arms folded, he propped his back against my side.

Once his breathing returned to normal, I said, “Tell me what you’re thinking.”

“I’m just TIRED of all the crammed-up PEOPLE at school! People EVERYWHERE! Everybody smashed together.” He pressed his palms together as though squishing play-doh. “Too. MANY. PEOPLE.”

His breathing hitched and started getting out of control again. I put my hand on his shoulder, light in case he wasn’t ready. He didn’t brush it away.

“I’m sorry you’re feeling overwhelmed. Here’s the good news: you had a day full of crammed-up people, and STILL you got NINE green marks from your teacher. How great is that? It means you worked really hard not to freak out at school. Super job!”

He didn’t respond, but picked up a piece of notebook paper and a pencil and pulled out a chair opposite me.

“I know being around a lot of people and noise can be tough, but I have to tell you: especially in the last few weeks, Daddy and I can tell you are working very hard to deal with it. We are so proud of you.”

Sniff, sigh. 

I waited a few moments, then looked over at the paper. He was rewriting the problem, this time sans mistake.

Once finished, he looked up at me with no more apparent angst.

“Thanks for always helping me. You’re a really good mom.”

***

If you’ve been part of the Hypervigilant community for a while, you may already know about his recent Autism Spectrum Disorder diagnosis. (If not, there’s the link.)

ASD explains a lot (Asperger’s, now considered part of the ASD spectrum instead of a separate diagnosis, is where our guy lands).

While we’re not letting the diagnosis be an excuse for behaviors that are outstandingly inappropriate (in fact, we haven’t told him), it supports our earlier suspicions that sometimes, “there are just

Too Many People”

and his sensory intake ability is overloaded.

We need to be sensitive and willing to accommodate.

Consider yesterday’s situation.

Assuming belligerence (which is how it appears sometimes), his pushing me away seems angry and rude. If I react with a consequence for being rude, he feels misunderstood, which escalates his reaction.

Understanding Autism, we realize that sometimes he’s overwhelmed and needs a minute. Allowing him to control the interaction and physical connection, while not letting him escape to his room, gives him the opportunity to grow socially.

If he seemed out of control emotionally, I probably would have given him the option of a cool-down in his dark, quiet room (door open), with a definite re-connection afterwards. We’ve done that before.

But he won’t always be able to flee overwhelming situations, and the best place for him to learn to self-regulate without running away is at home.

He’s a fantastic kid. Smart, artistic and musical. Really amazing. (And if you have any questions about World War II aircraft or ships, he’s got you covered.)

So I’m rethinking this whole WTF thing.

Fantastic + Autistic = FantIstic

Wow, That’s FantIstic. 

Maybe I’ll get that t-shirt, after all.

 

 

 

Diagnosis Redemption

Climb High

Climb High Photo Credit: Casey Alexander

 

When our children came to live with us, we learned about despair. Loss. Grief.

Theirs, not ours.

Our son, then five, woke up screaming between 3 and 4 am. Every morning.

I dragged my laptop (and myself) into his room each time, sending email and running searches. As long as I sat in the room—near the bed but not touching him—with lights on, he slept. Or appeared to sleep; if I left my assigned location, he screamed again.

We couldn’t touch him.

The rare exception was during the screaming fits, when he clung to me like an underfed, sleep-deprived monkey.

He never looked anyone directly in the eye.

He scooted himself underneath any cave-like spot. At our church, they learned to leave him there until he came out on his own. A children’s church volunteer sported a nasty shin-bruise after getting too close.

His first reaction when feeling threatened: lash out, duck under or climb high.

Boy, could that kid climb. High and fast. Still can, actually.

No bad people can get you if you’re thirty feet up a tree. 

He couldn’t wear any clothing with texture. Soft cotton, no tags. Couldn’t eat mashed potatoes without gagging. Anything soft or mushy? No way.

I told the social worker about my concerns. Could this be Autism?

If you’ve read many of my earlier posts, you probably know…our SW was a real gem. (Yes, that’s sarcasm.) She suggested that if we couldn’t handle the children’s issues, social services would kindly remove them from our care.

Threats of removal were, in fact, her only response to my requests that our situation be evaluated for additional training and support as a Therapeutic Foster Home.

At five, he knew only a few letters of the alphabet and exhibited delays in speech and gross motor skills. I contacted the local Children’s hospital about therapy. Ah, the waiting list.

He was so afraid of the other children in his Kindergarten class. Unfortunately, when threatened, his stunted social ability limited him to only a few options: fists, feet and head.

Finally, after six months of driving to the school almost every day to sit in his classroom (the Principal allowed me to stay, considering our situation), the SW approved psychological testing.

This concession came only after multiple attacks on other children in his class and several foiled attempts to escape the school caused the principal to recommend he attend only half-days.

The doctor spent about 45 minutes with him and pronounced his diagnosis as ADHD.

I listed the issues we’d seen in the last six months. “Do you think he could be on the spectrum?”

Nope.

Just traumatized. He’ll be fine in a few months. 

Finally, spots opened up in speech and occupational therapy. The therapists agreed with me. ADHD might be part of the problem, but wasn’t the whole story.

A few months before the adoption finalized (and over a year after they came to live with us), I received their full history.

He spoke about ten words when he was three years old. Most of his communication was nonverbal. His behavior was out of control. No one could work with him. 

For the next four years, every moment became therapy. We worked on speech, motor skills, interacting with others.

During the school year, they attended our local elementary school (with an IEP). He spent part of his day in the Special Education program. In summer, I homeschooled the two of them, reviewing previous learning and adding more skills. We took time for play and breaks, but most days they spent at least an hour on math and reading.

Beginning second grade, he read on a Kindergarten level. He won a book during our library’s reading program, The Family Secret. I knew the reading level was far beyond him, but the graphic novel nature of the book fascinated him. He became obsessed with the World Wars.

At my aunt and uncle’s house, he discovered war documentaries, mostly in black and white. His obsession expanded to include almost any war. In the bookstore, he begged for coffee-table size books about conflicts in Vietnam and Korea.

And his reading ability exploded. Now in 4th grade, his reading level borders between 5th and 6th grade. He draws elaborate representations of planes, ships and tanks. His attention to detail is unbelievable.

He hears music in his head and recently discovered Beethoven. He’s asking for piano lessons this summer, specifically so he can learn to play the 5th. My mom gave us a set of classical CDs; he vacillates between Tchaikovsky,  Schubert and Bach during the day. At bedtime, it has to be Beethoven. And if someone is rude enough to talk during the first movement, we get a rewound encore.

But his social skills are still far behind what they should be. He doesn’t “get” why certain things are inappropriate. He still can’t choke down certain foods or wear irritating clothing.

Once again, I asked his counselor.

Could he be on the Autism Spectrum?

And this counselor, too, who sees him once every two weeks for forty minutes, said, “I think he’s just OCD. And maybe a little eccentric.”

Right. Because “eccentric” is a word we use for nine year old boys. 

Finally, I talked him into psych testing. I am not a professional, but I live with the kid. If he’s not ASD, I’m crazy. (Which is likely still the case…)

After the first part, I met with the counselor.

He appeared a bit gobsmacked.

I don’t want to jump the gun, but it appears he could possibly be on the spectrum, based on preliminary testing.

No, really?

A second round, including feedback from his teachers. I asked him to call me with the results.

His secretary called instead; I think he’s mad at me. She was hesitant.

So, his tests show that your son has ADHD.

I almost laughed out loud in frustration.

And he has Autism. 

THANK. GOD.

Finally, a diagnosis.

I AM THRILLED.

Now, some of you may question my sanity. Several of my friends have ASD kids and aren’t very happy about the problems ASD brings.

However, for the last several years, I’ve been working more or less alone (as far as therapists and counselors), coaxing therapists into doing things that help kids with Autism even though “he’s not Autistic.”

Finding ways to help him learn.

Explaining to people that he “needs a little extra” when it comes to understanding others—especially other children.

PLEASE: Don’t corner him. Don’t force him. Don’t scare him. Don’t misunderstand him.

Last summer, he went to a basketball day camp and spent most of the week on the bench (I found out after the fact; he wasn’t forthcoming because he thought he’d be in trouble for acting out). They didn’t give him space to calm himself when he was agitated, which meant he ended up acting crazy.

They saw his ramped-up reactions as misbehavior, when he was just scared and overstimulated. Not their fault either; they’re not trained for special needs. But if we’d had a diagnosis, it might have changed their perception of his actions.

This summer, with the diagnosis, he qualifies to attend a camp for kids on the spectrum, with counselors trained to help him have the most fun possible. If he needs a minute, he can have a minute. No benching. SO. COOL.

And yes, I feel a little bit “told ya so.” I want to call that (no longer working) social worker and give her a piece of my mind.

Sure, lady, he’s just fine. He needs no special accommodations. It’s all in my head. I’m just being hypervigilant. 

And when it comes to my kids, I’ll be hypervigilant to my dying day.

Because after the start they had, they need all the help they can get.

And Hubby and I plan to make that happen.

We can’t wait to see how high he climbs.

 

 

Suicide Rates are Higher in Autistic Adults.

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Photo Credit: Helen Harrop, Suicide Survivor

One of my blogging buddies wrote the article below. When I wrote my Suicide post, she mentioned that the original title could be misinterpreted by adults on the Autism spectrum. I reworked a couple areas of the post for clarity, then asked if she’d be willing to write a piece about suicide and Autism.

If you’ve been reading Hypervigilant for a while, you know I have strong feelings about the need to understand those with Autism. Her writing definitely supports that goal. Every sentence of this post is worth your time. And if you don’t already follow her blog, you should. She’s phenomenal.

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Another blogger asked me to write this. After a misunderstood blog post title apeared that they posted. With all the noise about vaccines and Autism in children, a very serious matter is being over…

Source: Suicide rates higher is Autistic adults.

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