Category Archives: Welcome To Autismland: Population YOU!

Out-of-Focus Musings of a Disturbed Mind

Head Rush

I was complimented recently on my writing, it came via someone with a tenuous Facebook connection. It’s the first time anyone who wasn’t a friend or blood relative (and therefore obligated to like my writing or at least lie to me and say they do) told me they found my writing funny. (But funny in a good way.)

It made me feel, just for a nano-second, what it must be like when famous people get recognized. It was awesome and I thanked him…and then felt like a total fraud because I haven’t given two thoughts to my blog in months!

You can thank/blame him for this post.

Continue reading Out-of-Focus Musings of a Disturbed Mind

In Times of Unrest

I sometimes wonder why I do the things I do. I definitely look at the world that way. This week has been a mixture of both wonder and awe, terror and despair. The bigotry and hatred revealed with each new episode of violence has scarred our nation and clouded my spirits. As a humor blogger, I struggle to find the balance between tasteful observation and knee slapstickery. I hope this manages to reach that slippery peak.

I am reminded of a morality fable I heard once (which apparently it turns out is a fabrication, but you can find out about that at the link for Two Wolves.)

It goes something like this:

The Two Wolves

A grandfather was talking to his grandson:

Grandfather: “There are two wolves inside you. One is evil–always fighting, angry, and hurting others. The other wolf is good–caring, honest, and kind. They are fighting a battle inside you every day.”

Grandson: “Who will win, Grandfather?”

Grandfather: “The one you feed.”

I’ve heard this before, but not as the link above tells it. And never knowing that the wolves were described in terms of Black and White.

(Official Sidebar: You can just guess which is the ‘bad’ wolf. The internet is helpful in peeling layers of meaning behind the over-simplified and trite.)

When I watch the world burn and can do nothing about it, I am anxious. I feel the compulsion to do something and, conversely, nothing at all. I am torn between two wolves: outrage and apathy. Why does this keep happening? Why can’t things change for the better instead of the worse. Maybe it just depends on where you want to focus. Which wolf you choose to feed.

Before the world went to hell in a hand basket, I signed up for another round of GISH. So, as the horrible week’s events unfolded, I wondered whether participating in a fun-fun charitable activity was, perhaps, a selfish and clueless overindulgence and a slap in the face to everyone who struggles and suffers in the world. In particular, was it kind of like dancing at a funeral–morally repugnant and questionable behavior that should get me unfriended/shunned? (That said, I invite dancing at my funeral. Joke telling. Maybe a clown? I think you will need to find excuses for joy when a light such as myself leaves the world.)

So, given a choice between morbidly watching the world burn or dancing…I think you can guess what I chose.

BUT FIRST…I did something moral and uplifting.

I watched a terribly earnest live stream discussion about race relations; a topic that has not impacted my very-white life much before but maybe it should:

As a result of listening to a panel of experienced activist, I tried my best to…

DO THE HUNT

(while being conscious of injustice in the world burning around me)

The first item was my most successful–probably because I had energy and my son to help add flair–and height–to the performance.

Item 20. The Summer Olympics got canceled, but that doesn’t keep a focused athlete like you down. Show us your entry in the Socially-Distanced Games.

I was trying to synchronize our toilet paper rolls mid-air. (The last image was the winning shot, but I loved all the pictures taken with the help of my son’s ABA aide. He is unnamed for his privacy, but shout out to a very patience guy.)

And then…this

Item #___ (Oops, didn’t copy this one) Take a time lapse recording of yourself sculpting a monument out of a playdough and smashing it, or something edible and eating it.

As usual, I missed the part where you had to sculpt AND eat at the same time. And I froze my sculpted spuds so I could recreate a Winged Victory feast.

I call this potato-y beauty: Winged Victory–on Ice

In a fourteen second recap, you can watch me munch on my icy statue:

I was darned proud of the art I created. But freezing them makes mashed potatoes sad eats.

You’ll note my rather spacy behavior increases the later the event runs. (As does my very blue eye shadow.) I only managed 4 hours of sleep and I would pay for it later! Oh, would I pay!

But before that bill comes due…there are more GISH-y items to fulfill.

Item 37. Create a Fundraising page for your team, and get family, friends, and others to donate. (Highly abbreviated description)

This was one of the serious but important items, as GISH is intended as a fund-raiser as well as a fun-raising time. We joined the GISH sponsored Racial Justice and Equality Fundraiser to support the NAACP. Which I have never done before this weekend. We didn’t make the 10 donor minimum required, but we did raise $230. And that isn’t bad for a 24-hour time period! I would thank everyone personally, but most people gave anonymously. So, to all you all, you know who you are, thank-you! You give me hope.

Which leads to my biggest and most embarrassing endeavor.

Item 32. In the style of Eurovision: write and perform an original, uplifting song of hope using instruments of your own creation.

I had no idea what Eurovision was before I picked this challenge. I watched about an hour of eye-popping performances and did my best to replicate their…um…energy. I opted not to dress as a minion of hell only due to time constraints and a lack of lycra.

(Warning, this ‘song’ is both painfully earnest and shatteringly bad. I recorded it at four in the morning because I couldn’t sleep thinking about it. Might I recommend a tall glass of alcohol–or maybe shot glasses. You can take a swig whenever I say “Hope,” Peace,” or “Justice.” I had NO alcohol beforehand, more’s the pity.)

Like red wine, you may never get the stain of those lyrics out!

In case you couldn’t understand my exhausted 4:00 a.m. warbling, here are the lyrics–which I slaved over, so stop laughing, damn you!

JUST US

We need Hope, Peace, and Justice
And it starts with me and you.
We need Hope, Peace, and Justice
And here’s what you can do.

Listen for an answer
In their cries of pain
If you can’t feel, then you can’t heal
I’ll tell you once again.

We need Hope, Peace, and Justice
And it starts with me and you.
We need Hope, Peace and Justice
Here’s what you can do.

Pain pushes back
Against unreal attacks
You can’t see the future
If you’re always looking back.

We need Hope, Peace, and Justice
And it starts with me and you.
We need Hope, Peace, and Justice
Here’s what you can do.

Consider possibilities
In what the other person sees.
Don’t debate or interrogate
Dialogue is a two-way gate

We need Hope, Peace, and Justice
And it starts with me and you.
We need Hope, Peace, and Justice
Here’s what you can do.

Change happens in uncomfortable spaces
Who’s gonna win these human races?
The only hope we have for peace
Is just…us.

We need Hope, Peace and Justice
And it starts with me and you.
We need Hope, Peace and Justice
You know what you can do.

Wow. I’m sure that’s going to win lots of awards, but before you are quick to condemn my words, know this, I borrowed them from the speakers of the aforementioned “Racial Inequality and Injustice” live stream. A lot more qualified people than me recommend that, instead of hiding behind our white privilege, we use it to make things a little more fair out there.

I am not good with conflict; I actively avoid it whenever possible. But, (*heaves a huge, uncomfortable sigh*), apparently that is part of the problem. A lot of good, earnest people have stood back and let the angry, hyperbolic, asshats speak for us all. Perhaps the bigots and racists just need to be told that they are bigots and racists. Is it possible they don’t know?

Oh, I’m sorry. *Gets down off soap box*

Now, back to GISH!

I loved the idea of this next item, but my execution was more along the lines of after Marie Antoinette meets the guillotine–a bit choppy.

31. GISH keeps you so busy, you need to clone yourself to get the List done! Create a single image compositing at least 3 iterations of yourself working to completing a GISH mini hunt Item

Making the art was a labor of love…and bad photo editing. My printer was running low on ink.

After finishing almost all of my assigned tasks…and abandoning one…I decided to use all my many years watching forensic programming to try my hand at carving up a human being…

Now that I have your attention. I give you…a tasty lesson in anatomy:

Item #: ???? Sorry, I threw this thing together as a last-minute project and did not copy the verbiage. But, I think you can guess what they asked for.

Here’s a few staged photos with the body.

Brains! They’re what’s for dinner.
It’s Take Your Kid to Work Day at the Morgue!

This body was a kidney donor–as I ran out of room to put any in.

The hardest part was figuring out how to dispose of the body! (If I ever become a spree killer, we will know the moment I started down that path.)

I always enter GISH with high enthusiasm and end up crawling across the finish line, one arm outstretched, to get the last thing in before collapsing.

The One Last Thing:

Item 13: Celebrate the gift of virtual travel by creating a internationally recognized building or monument out of Amazon boxes.

The Washington Monument is to scale. The artist is not!

My biggest challenge was I HAD NO AMAZON BOXES. None. I put them in out for recycling last week. LIKE AN IDIOT!

So that was GISH, slam bam, thank you ma’am until 3:00 O’clock p.m. (our time)….and then they added an extra hour! Unheard of! But my kid knew he was getting a trip to KFC after GISH was done and he was having none of this, “But, son, can mommy play one more hour?” nonsense!

Honestly, my kid was so fantastic, it was unbelievable. I had help with him for only two hours and then rest of the time, he was good…until…

IT’S PAYBACK TIME

I was absolutely fried waiting for bedtime to roll around. That’s my excuse for not noticing how odd the kid was being about staying in the basement.

I try to drag him up at 9:00 pm but give in and let him get a little more time downstairs…

10:00pm rolls around and he’s apparently drawn a line in the sand over what he wants–and he wants to sleep in the basement. Which is a no-no because it has no egress.

He refuses to come upstairs. I refuse to let him stay there.

Cue Krakatoa explosion.

My kid melts down like he’s a glacier under global warming. He vents. He fumes. He hits and bites himself. He tosses a giant bin of books like he’s a member of an ultra conservative cult that loathes reading. He breaks my heart. Every time.

I spend the next TWO HOURS calming him down and figuring out he’s got gas! We finally crawl into bed after midnight. I sleep like the proverbial dead. The next day, the kid wakes up happy like yesterday never happened and asking for bacon! Kids.

So, if any of you were feeling a bit judgy about my decision to employ humor, art and theatrical creativity to survive this week, now you know, I experienced the riots in my own special way. And for me, they never end. They can come at any time. And I just have to stand by and wait for the fires to burn down before putting my kid back together again. It’s a co-dependent, Humpty Dumpty kind of relationship, but it works. Mostly.

Stay strong my beloveds. It’s a cruel world and you don’t want the wrong wolf to win!

_______________ You Made It Through Bonus_________________

I forgot one:

If you have excellent eyesight, you might see my RICEWORD entry!

….And then this happened

Last night I tried to write a blog post. I was struggling to put into words how I feel about the situation in Minneapolis. The anger that permeates all the news regarding race in our country. The helplessness to change anything.

And then I went upstairs to check on my son and was reminded of WHY you never leave him alone for any reason…

This happened because I told him I was going to cut his hair the next day.

I often wonder whether my son is actually listening to me.

Now I know.

He is listening with a vengeance.

And a plan.

Below is a link on Facebook to my reaction to his styling techniques.

If you are struggling to get through depression or the continuing of Covid-19 isolation, or you could just use a laugh, it is my gift to you.

Also, you won’t be feeling so bad about your own hairstyles now, will you?

I just can’t stop laughing every time I watch this.
How can you NOT love this face!

I.E.D.s in the Family Tree

I used to scream bloody murder when I was a child. I would shriek so loud, so long, that eventually I would go hoarse. I even developed nodes–tightened knots on my vocal chords. When I finally figured out screaming wasn’t helping me I stopped. This allowed my vocal chords to relax and I discovered I had a deeper register. (As a result, I sing somewhere between contralto and tenor with a hiccup in my falsetto.)

What I couldn’t have told you, even if you had asked, was why. Why did I devolve into a nightmare child shuddering in hysterics? I couldn’t tell you then, but I might be able to tell you now.

But first, a little back story…

Continue reading I.E.D.s in the Family Tree

Hiding from the Moon on a Very Dark Night

In case anyone needs to hear this, you are going to make mistakes as a parent. Some of them will be colossal. Just try not to let that be your standard operating procedure. Learn from my mistakes…


*

Continue reading Hiding from the Moon on a Very Dark Night

When Life Hands You Bitter Melon…

Thanksgiving was one of the roughest weeks I have had this year. Technically, it was rougher on the kid than on me. But misery rolls downhill, like Jack and Jill, leaving you with a busted head and an empty pail.

Continue reading When Life Hands You Bitter Melon…

Potty Training on the Spectrum

Recently someone asked me how I managed to potty train my autistic child. I said something like, “I went through hell and back, that’s how.” Without blinking, they asked directions for the road map to hell. I finally found the notes I used back in 2010 on a back-up drive (whew), and in reviewing what I went through, I decided this might make a better post than my review of Men In Black: International. Though, with fewer references to poop. For all the autism parents out there, this one’s for you.

Continue reading Potty Training on the Spectrum

Divisible by Love

As my favorite tv show—The Big Bang Theory—comes to an end, it wrestled recently with a surprisingly feminist sub-plot: whether or not a woman should want to have children and what it means if she doesn’t. The series frequently pokes fun at parenting including the ambivalence surrounding having kids. Perhaps I have laughed a little too hard at some of these jokes, or maybe I appreciate that someone had raised a question that bothers me in my own struggles with motherhood*.

Continue reading Divisible by Love

Mulan-ing It Up and Deciphering Pernicious Plumbing Portents

Mulan on Rooftop
Definitely Stolen Image…Come on Disney, let me have this one!

In science fiction/fantasy stories, when the heroine has pissed off the gods or broken the ancient talisman of her people, she can go on a quest to redeem her honor. Sure, she may have to crop her hair and dress like a boy to defeat the Hun army…but in the end, it’s worth it.

She returns with the seal of the emperor and is held up as an example of once-in-a-lifetime courage and fortitude. At the very least, she is welcomed back home with cries of “Huzzah” or a marriage proposal.

At what point does our heroine realize that she is in an epic battle for her existence?* Maybe to her it just seemed like a lot of bad luck rolled up on her at once?

I ask this question, in truth, because I think I missed a giant clue along the way.

Or I’ve defiled a temple somewhere and the gods are angry.

I’m not entirely sure when it happened.

But I think it started with the toilet. Continue reading Mulan-ing It Up and Deciphering Pernicious Plumbing Portents

With Prejudice

I’ve been keeping secrets.

Because I had to.

Because it involved a court case.

That involved my son.

I wrote an anguished post with gut-wrenching pathos at the time it happened.

And I’ve waited until the final hearing to share it.

You may question whether it is appropriate to publish such personal information.

I certainly have.

But, I have decided that if it is at all possible to help another child by sharing what we endured…

…to reach out to other autism families.

…to other police officers.

…to other neighbors.

Then, maybe next time, nothing bad will happen.

Or something better will happen.

Or nothing will happen at all.

And wouldn’t that be beautiful!


Cops
Who did this protect and serve?

June 9, 2018

Dear Officer:

We met today under the worst circumstances. You were just doing your job; I understand that. But I feel I need to explain why I behaved the way I did and, perhaps, you can understand a little bit how the exchange seemed from my side of the handcuffs.

I came to the door, half-clothed and disoriented by lack of sleep, to learn my son had escaped. For fourteen years, I have been responsible for keeping my child safe and I have failed. Again.

But this was different from other times.

The neighbors whose home he entered were sleeping. All they heard was an intruder.

And my son no longer looks like the little boy he is.

When you first approached me, you said something about my son not responding to requests. My reply was not polite.

“Of course he can’t respond. He is a non-verbal autistic!”

You walked away as if you needed space to process that.

So, when you came back and asked me, “Do you realize what might have happened?” I answered you honestly.

“Yes. Yes, I do. It is my greatest fear.”

I was not trying to argue that the situation wasn’t serious. I was just grateful nothing worse had happened. I was focused on making my son feel better, to calm him down right now so he wouldn’t injure himself.

And you wouldn’t let me see him.

You have protocols for interactions. None of the officers would let me approach the car where my son was handcuffed. But I could hear him wailing from where I was standing in my bare feet on a damp sidewalk. You have your emergency response and I have mine.

I have a mother’s need to care for and defend her child. It doesn’t matter that my ‘child’ is five feet eight inches tall and weighs 170 pounds. He is still a child who was crying because you had his blanket, crayons, and papers. Materials now taken away in evidence.

It is probably not expected for officers to feel empathy for the wrong-doer, or his mother. To care about both sides of an equation. Perhaps you were running on adrenaline?

Did you train your firearm on my special need child? He couldn’t follow a simple command like, “Put your hands in the air and get on your knees.”

This thought haunts me.

I later learn, from the reports, that you had to tackle my child to get the cuffs on him. That he resisted and clung to a door frame as he was pulled from the house. This explained the bruises and abrasions.

Trust me, I can picture what might have happened in painful clarity.

In the past, when my son has escaped and entered homes or the nearby church, people have recognized his special needs and things have been okay. Maybe that made me blind to a growing problem.

The fact that my son was wearing a pair of Christmassy pajama bottoms and a Victory Day t-shirt from the school’s special needs programming wasn’t enough to tell you how very special he is.

The training that kicks in and locks an officer into a rigid response doesn’t allow you to recognize my shock and relief at a nightmare that wasn’t fully realized. Perhaps that looked like an insult to you? It wasn’t meant to be.

You couldn’t know that I had been sick with Salmonella. That Friday night was the first night I got any real sleep in almost a week. So, when my son woke at five a.m. Saturday, I was disoriented and put him back to bed. That when he woke me at 6:10 a.m., I was more so. That I fell back asleep is my fault. I promise you, I’m wide awake now.

I am haunted by what might have happened. I am haunted by it every time he is out of sight. I am haunted by a future I cannot see or control but can only dread. Fear never leaves me.

I am grateful that he wasn’t taken into a police station and booked. Thank you for releasing my son into my custody. Even if, like Cinderella, you sent him home with only one shoe.

I had hoped that the neighbors would drop the charges against my son for entering their home and scaring them so badly. But their fear was greater than their understanding of autism or the limits of a system that is not built for children like mine.

I do not blame them. Or I try not to. I understand how it must have looked from their side of the road; I just wish they could see the situation from mine.

Just as I hope you can understand. And that you never learn how it feels to watch your baby in handcuffs, crying and just wanting to go home.

*


Like many unpleasant life lessons, this has been a learning experience.

The wheels of justice move glacially slow. 

We waited weeks for the notice that my son was being charge with first degree home invasion. Then we had to be assigned an attorney by the court. Then there were appearances and reports to submit. The sheer drag time of getting a competency review dulled the initial sharp stabs of terror to a steady, gnawing anxiety.  I cried a lot this summer and into the fall.

During that time, Child Protective Services became involved. I was very grateful for the unexpected kindness of the Children’s Services Specialist who eventually cleared me of charges of neglect.

There were some positives.

The county health organization expedited Alexei’s process for getting ABA assistance as well as Community Living Supports. We are finally getting the help we’ve needed. 

Also, I was able to take advantage of a program through Vivint Gives Back to get a reduced rate for a security system that will wake me up if any one of the doors or windows are opened.

And my son’s window now has security bars, because he can get into trouble even faster than an alarm system can wake me.  (I stopped jerking awake at the slightest noise after these were installed.)

My son’s psychiatrist agreed to let my son take stronger meds to help keep him asleep.

And this week, my son was declared legally incompetent.

The case was dismissed with prejudice. Which is a good thing. It means he can’t be held responsible for his crimes and the verdict is final.

And I can only hope that the next time a family like mine is struggling, that it doesn’t take a crisis to get assistance. And that maybe the neighbors will offer to help make our lives easier instead of harder.

As for me, I spent these months channeling my fears and anxiety into my garden. Every time I had a panic attack or thought about losing my son, I planted flowers. I think I there are over five hundred bulbs and perennials out there now.

So, when spring arrives, perhaps it will bring a promise of better things.

Tulips