People here have been great to us. Very welcoming. But every so often I have an interaction with a local that reminds me all too painfully that I am a transplant here.

About a week ago, I wandered into the local feed store to buy some grass seed. Yes, there's an actual feed store. It looks like something out of the 1940's, with all sorts of animal feed, gardening and farm supplies.

I have about a 3’ x 3’ bare area in my front lawn. I was hoping they would sell me just a small amount of grass seed.

“Do you sell Zoysia grass seed?” I asked. The clerk studied me suspiciously.

“Not in stock but I could order you a bag, be here in a few days. $80.”

“I really only need a small amount, not a whole bag.”

Now he was DEFINITELY looking at me suspiciously.

I had this weird feeling as if I had just asked to buy a thimbleful of dried twigs or something.

Him, squinting at me and leaning back slightly: “Exactly what are y'all trying to do?”

I explained.

He stared.

“Ma'am. Zoysia grass is all over the place here. It spreads like wildfire. What you want to do is dig up a few small plugs from around the edges of your yard and put ‘em in the bare spot along with some soil.”

“oh.”

A couple of clerks seemed to suddenly turn their backs to me and it looked like their shoulders were shaking.

I thanked them and high-tailed it out of there before I could hear the laughter starting.

I bet that people with autism feel like this a lot. Like everybody else in the world has been let in on all the secrets but them. Or there was some type of social manual they were supposed to be given at birth, but the hospital was out of them that day.

I returned home, laughing at myself, and with maybe a little more empathy towards what my sons go through every day.

Ty was home with me overnight this week. He continues to explore our new house. He seems intrigued by it.

Something interesting about Ty is that you'll think he's completely ignoring you, but actually he's secretly watching you out of the corner of his eye or something.

I was putting some things away in the pantry, while Ty sat in the kitchen writing on his notebook, seemingly unaware of my presence.

I walked out of the kitchen for just a few minutes. When I came back in, Ty seemed to be sitting there just like he was when I walked out. Except he was eating Skittles.

Where the heck did you get those??!!! I asked him. Predictably, he ignored me.

Then I remembered I had bought a couple boxes of Skittles. They were in the bottom of the pantry way towards the back. Putting them in a somewhat obscure place helps keep ME from eating them!

That little bugger must have gone into the pantr

y, located the Skittles, shut the door and sat back down in less than five minutes time!

“You're so effin’ cute, Ty!! I said.

I started to leave him there with his Skittles. As I stepped out of the kitchen door I heard a hoarse, deep whisper behind me: “Effin’ cute, YES!!!”

If you are a neurospicy person living in a world where the majority of people are neurotypical, you may find yourself agreeing to doing a lot of things. Things that are against your nature. Things that you dread for weeks but you force yourself to do them because they are A) Helpful to projecting the false neurotypical image you try to project to the world; B) Supposed to be fun because a lot of neurotypicals think they're fun; C) Are very uncomfortable to you from a sensory perspective, but you feel are expected.

Don't get me wrong - I'm not saying that being neurospicy entitles you to do whatever you want and nothing you don't. Actually, I wish I coul

d tell you that. I'd love that for you. But no.

What I mean is that you probably have a little more leeway to do things your way, or to choose not to do certain things, than you think.

Here are some examples of “You Don't Gottas” that may come in handy.

You Don't Gotta (let's abbreviated this YDG);

1. YDG: Do anything a neurotypical person asks you simply because it was them who asked. Neurotypicals are not inherently superior to neurospicies. Don't let ‘em pull rank.

2. YDG: Do everything by yourself because communication is so hard for you. Extreme independence isn't a strength; it's a trauma response. Ask in the way that works best for you. If writing a request is easier than conversation, do that. Who cares if they think its weird. They'll get over it.

3. YDG: Attend every single social event that comes up. It's healthy to put yourself out of your comfort zone socially on occasion, but if you are constantly living in dread of your next social commitment, cut back on the number of social things you agree to attend. Many neurospicy people are extremely honest, and are not sure how to politely decline an invitation. “Sorry, I have a conflict” often works. The conflict can be an emotional or sensory conflict, not just a scheduling one. No lie.

4. YDG: Tackle tasks of daily life the same way as others. On the show “The Big Bang Theory,” the character of Sheldon Cooper, who is implicitly autistic, designs a neat little board that helps him neatly and quickly fold his shirts.

   I have heard from multiple people on the spectrum that folding clothes challenges their motor skills, and they get frustrated because they want to do it perfectly. The “Sheldon Shirt Folder” was a joke on the show, but enough people identified with it that you can now buy one on Amazon.

5. YDG: Accomplish hygiene tasks the same way everyone else does. I have read hundreds of tips on how to make taking a shower more pleasant for someone who finds showering to be sensory torture. Everything from dimmed lights to special shower heads. But here's the most effective one I've ever heard: “Don't take a shower.”

   Take a bath, wash with a washcloth at the sink, sometimes use dry shampoo and body wipes. You do you. But definitely be sure you do a thorough job of it! You don't wanna be the stinky person in the elevator, and more importantly, its good for your health to keep clean.

I’d love to hear tips from some neurospicy readers on how you handle things like this. It would make a great follow-up blog.

Til next time, carry on but weigh your options!

In fact, Ty seemed flat out thrilled with the new place. I went to pick him up at his ‘apartment’ (group home) to bring him home to see it for the first time.

I had not told him yet that we were moving to a new house. Years of experience have taught us that Ty very much “lives in the now.” So if I had approached him months ago to tell him we were moving, he would have been very confused and angry if I didn't immediately show him what I meant.

Cole, by the way, is just the opposite. He likes a lot of advance warning on major life events.

So I came to pick Tyler up with photos of each house, labeled ‘new’ and ‘old.’ I presented them to him. He concentrated hard. Then he came out with: “NEW HOUSE NO!!!”

Me: '“Yes, Ty. New house YES.”

Him: “New house, yes??…New house yes.”

I realized that his first statement, “NEW HOUSE NO!!!” was basically the autism equivalent of “Really?? You're shitting me!!!”

So I brought him to the new house and braced myself for an epic tantrum. But no!

He did take the precaution of putting his headphones on before he went in, just in case there was music or TV.

He tip-toed in cautiously, looking around. “NO DOGS NO!!!” He inquired emphatically. I assured him there were no new pets.

I led him down the hall to his new avocado green room. He went right in and set his beloved notebook and pen on the bed. I had even made his bed up with his avocado themed sheets so it looked as much like the old room as possible.

Then I decided to just let him settle in for a bit while I did some things in the kitchen.

About 10 minutes later, I heard something in Chris's “bar/photography equipment/office room.” This is a weird room that was the local eye doctor's office in 1960 when he built the house. “Dr. Goode,” it says on the old blueprints.

So it has a lot of dark paneling and lots of shelves, which currently hold miscellaneous bottles of bourbon, cameras, books, photo albums and the likes. Also he has a lot of bar glassware lined up on them.

At the old house, Ty had a somewhat annoying habit of tapping each of the bar glasses the minute he came in. Sure enough, he was in there doing this ritual.

A bit later, I noticed he had located the front coat closet (we had come in the back), and put his shoes in there just as he always did in the old house.

He totally understood.

Awhile later, I found him sitting on the bathroom floor writing random phrases in his notebook, again just like he always does.

Except this time, to my horror, he had discovered the old heat lamp that is still installed in the bathroom wall. It was about 1000 degrees in there, but he was happy as a clam. I turned it off and touched it gingerly. It was glowing but actually was not hot enough to burn me. I'm not gonna rely on that though.

So I lectured him on that and kept an eye on him but he didn't turn it back on.

So well and good.

He slept fine, and especially enjoyed looking in the little rooms and closets. His favorite part was discovering the basement. The basement used to be a full apartment, with a kitchen with ancient appliances, and a bathroom and shower that look like they were taken right out of a prison.

It's gross down there but Ty was thrilled.

So both my guys took the move in stride. Cole is pretty much good staying anywhere as long as he has his books. He also loves being able to walk to all sorts of things in the small town of Ashland nearby.

We are very relieved the transition went well.

Looking forward to getting totally settled in and writing more blogs!

in the middle of moving to a new house and selling our old one. We needed something a bit more geezer-friendly! 1960 rancher, only 20 mins from the old one, in Ashland VA.

I am pleased to tell you that, believe it or not, there is already a bedroom here that is avocado green, so Ty will be all set.

Both boys will see it this week. Change is hard for both of them, but I think they will love it once they adjust.

Lots of little places for Ty to hide, lots of wildlife for Cole.

Walkable to coffee shops, restaurants, library, etc.

More blogs to come soon once we get settled in.

I went to visit Ty at his house over Memorial Day weekend. Ty has a long running history of assuming that any day on the calendar that has a holiday on it is a gift giving occasion.

Ty rarely chooses to communicate with us much at all. I've always taken this as a sign of his superior intelligence, because a large portion of the human race are idiots. Present company not excluded.

But not communicating in a traditional way does not equal not thinking. He simply does not attempt to communicate unless he has a burning desire of some sort, which frankly isn't often. Outside of Chick Fila chicken Nuggets, burnt Red Baron cheese pizzas, and glasses of water, his needs are few.

He uses only a few verbal phrases.

He has never agreed to use any type of assistive technology to communicate with us, despite much begging and pleading from both us and an endless procession of speech therapists.

However, once in a great while he will throw us a bone if we ask him to text something on the phone.

“Do you want to text your Dad?” I asked him last weekend.

“Text Dad, YES.” he decreed.

So I set him up with my phone, and he texted Chris the message I display the screenshot of which here. I swear he composed this independently. How he picked up on “Buy One Get One Free” I will never know, but he uses it to persuade us.

Sadly, he does not actually play games on the Switch. He mostly fiddles around with it a few weeks before he's done with it and tries to take it apart to look inside or something. Needless to say we will not be buying him a $400 Switch any time soo

n. Instead, I did find someone who would donate him a broken one he will love anyways.

Happy Memorial Day, Bud. Here's your gift.

“My kid can't have autism because is is sociable.”

“So and so has autism, and my kid's personality is nothing like his.”

And my personal pet-peeve: “But he's not that bad.”

What if you had dyslexia and needed help to learn to read, and we're denied help because “You're not ‘that bad,’ you can read about half of the content with no problem. So-and-so can't read any of it.”

So no one gave you the tools that could have helped you because someone out there was ‘worse’ than you. As if autism was a character flaw or something to be ashamed of.

I promise the following is not an ad for this guy. I don't know him personally or anything. The things he says just really look in my window!

Hope its helpful.

https://www.facebook.com/share/v/1D3cbcmNpm/

Me, philosophically, in reply to said guru: “That I'm an undisciplined slob?” 🤔 I feared this theory was probably backed up by my inattendance at the gym too.

“NO,” she scolded, “It tells me you are indecisive. And also that you probably have trouble staying in the present.

Me: “AH!!”

I didn't deny it.

Neuro-quirky people tend to create “Doom Piles;” which are piles of things they don't know the right place for. Coincidentally, the prospect of addressing this problem is so boring it causes almost physical pain.

So into the Doom Pile it goes, so one can go back into one's head and think of more intriguing and seemingly important things.

Different species of Doom Piles exist in the wild of a neuroquirky's habitat. Some are not exactly physical ‘piles,’ but metaphorical heaps of virtual junk.

Overflowing email in-boxes. Galleries on the phone full of pictures one will probably never look at again. Many of them were taken because a neuro-quirky thinks they will remind them of something that really ought to be paying attention to, and shouldn't forget. But that thing is profoundly dull, so just taking a picture of it lets one off the hook. It seems more responsible somehow to pointlessly photograph it before dropping the ball.

There are different species of Doom Piles. For instance, the Bedroom Closet Doom Pile Chair holds clothes that one wore once. They are slightly too dirty to hang back up or tuck into a drawer, plus that might involve effort. Laboring to find the right hanger and make space on an overcrowded closet rod; or trying to fold them neatly and put them in a drawer, are daunting tasks. Putting them in the hamper would imply the need to wash them, incurring further toil. So they build up one by one until they resemble a textile Jenga game. I'm about 99% sure the dirty clothes breed in captivity.

Eventually so many accrue they fall off the chair. At that point the neuro-quirky is obligated to wash them. On a good day they might also even put them away.

Lazy? Perhaps a bit. But you can learn important strategies from these observations:

First, there is not necessarily always a perfect place, dictated by the universe, to put something away. That place that “everybody else” seems to intuitively know it belongs. But any place you can think of is probably ultimately better than where you absent-mindedly left it. Trust me on this. If you put at least a little effort into it, the place you think of to put something away is usually, admittedly not always, the first place that makes sense to you to look for it.

Second, part of the reason you do this is that you have acute self-awareness that you tend to forget to do things.

“But if I put it away out of plain sight, I will forget to do something with it.” Come now. That won't work the second it disappears into the pile of stuff. Better to make a note of what needs to be done in a to-do list and/or on a calendar, and put it away out of sight til you need it.

Third, you need to stop judging your value as a human being by your ability to keep things neat and tidy.

I bet Aristotle could never find two matching socks either. And history hasn't held it against him.

Over the years I've made a little peace with my tendency to do this. As a result my house and my life are reasonably in order, at least most of the time.

But now you've identified the problem, what the hell can you do about it?

One helpful habit I have cultivated over the years is mindfully spending some time picking up after myself at intervals during the day.

Going through shutting drawers I left open in the kitchen earlier. Forcing myself to stop and deal with the day's clutter in my “landing zone,” which for me is my kitchen island.

For me, it has been more effective to accept that I do this and make a plan to go back and remedy it. Almost six decades of constantly trying to change my neurology has fallen flat.

I guess I do think a bit more before I drop something randomly on the kitchen island than I used to. But the scheduled “neurospicy cleaning zamboni” method works better for me.

If you think like I do, I hope you find an alternative like this. If you don't your self esteem may end up wadded up in a wrinkled shirt in the dresser.

And nobody deserves that.

When you are parenting a young child who has autism, it is very tempting to just give them a free pass on everything. Tell yourself way they behave is due to their autism, why should they change who they are? It's the world that needs to change. To a point, I absolutely agree with that.

I sometimes felt this way raising my two sons who are on opposite ends of the spectrum. Sometimes, being extremely gentle and not suggesting any behavior changes was the right thing to do. But at some point it occurred to me that within the bounds of their individual capabilities, it would be kinder to point out a general social rule so they are aware of it. They can choose to follow it or not.

For instance, if your son is intensely interested in spiders, he might want to talk about them a lot. This is somewhat ok with tolerant family members. They may even enjoy talking with him about them. But the truth is, a lot of people out there think spiders are really creepy and don't like to think about them. So if your beloved spider lover goes out into the world talking to everyone about spiders excessively, he will probably be quietly ghosted.

And he will have no idea why.

Maybe his autism is such that he truly can't control spending a lot of time talking about spiders to anyone who will listen. But if he does have the capability to understand that not everyone will enjoy learning all about spiders, he can decide for himself whether to share his spider information with this person and at this time. And for how long.

To the neurotypical person, this knowledge is often intuitive. But to a person with autism it may not be. And reading people can be difficult. But preceding the topic with a straightforward question is possible.

“Are you interested in spiders? I am kind of an arachnophile, myself.”

If the person says yes, then another question might follow.

“Do you want to hear something cool I just learned about them?”

And if the answer is ‘yes’ again, he might proceed for a few minutes, then change the topic. Or ask: “Do you want to hear more, or is this topic creeping you out?”

This is actually an important skill for everyone, not just those on the spectrum. I can't emphasize this enough. Literally no one wants to be held captive being lectured to on a topic in which they have no interest. Ask many college students or members of religious congregations.

I once heard someone with autism say that his life was like playing a game where everyone else had read the rules but him, and nobody would tell him what the rules were. Playing wasn't much fun and no one wanted to play with him because he didn't understand the rules.

Of course, our spider-lover might know the social rules but be too enthusiastic to not break them. Or he might not care about the rules and share as much as he likes, whenever he likes, wherever he likes. That's his choice. But if he is filled in on social norms, depending of course on his level of autism, it might be able to be a choice instead of an inevitability.

And once it's explained, he might see where it's ok to talk quite a bit about spiders at his local spider lovers club (those clubs do exist!), or at an exotic pet store. But maybe it's not so ok at Aunt Tilly's funeral.

Some things like ‘stim behavior,’ which is a habit someone has to self-soothe, may be an exception. The most commonly known one in the autism world is flapping one's hands. It's not really hurting anyone. Almost everyone does things to soothe themselves, whether they are on the spectrum or not. I personally didn't try to get my sons to stop doing behaviors that I considered a harmless stim, whether strangers thought it was weird or not.

Some people reading this might think my views are ‘ableist.’ A dictionary definition of ableism is “…the belief that non-disabled people are superior or "normal," treating disabled individuals as inferior, incapable, or in need of "fixing". This often manifests itself through inaccessible environments, insulting language, or pity.’”

While I can see this point of view, my own opinion is to give a person with autism the information on the social norm, and then let them decide. Not because one side is right or wrong. Not that they should have to do something just because the majority of people do it. But because they should have the right to choose.

I think of it in these terms: if I was in a foreign country, I personally would want to be informed of their customs. For instance, I know that in India it is customary to remove one's shoes before entering a house. I would want to know this, even if I chose to keep my shoes on. But at least if I got an annoyed glance or the homeowner started following me around with a broom, I wouldn't be baffled as to why.

Don't get me wrong, I am all for promoting awareness and acceptance of the ways of people on the autism spectrum. And I can see some progress being made in that direction. But it won't happen overnight. And some people simply are not supportive or don't care.

It's easy to say “We don't need their approval!! Who cares about those people??!!” Well, we don't have to care about them until we do.

Like when that person is one's angry boss. Or a cop giving one a speeding ticket. A neuro-diverse person could be dismissive of them, or try to educate them about neurodiversity at that moment.

But instead, it might be to a spectrum person's advantage to know how to navigate the immediate situation, and maybe leave the hater's autism education for another day. Maybe even another teacher.

I'd rather my loved one with autism knew the rules of the game. Then they can decide, within the realm of their abilities, and their personal interest, whether to play or not.

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Now that I think of it, he really could have secretly gotten an agent and published a book back then, and just never thought to tell me. I should Google that.

The reason I found out about it was that I noticed the name “Nicholas Terveti” showing up on random papers Cole left all over the house.

“Is this a friend of yours?” I asked him. “No,” he said simply. “It's me.”

I remember being distinctly tired that day, so I didn't really question it.

Somehow when he was visiting home last week, a full ten years after this initial conversation took place mind you, the name “Nicholas Terveti” came up again.

“I get the ‘Nicholas’ part.” I said.

The nickname ‘Cole’ is short for his given name, ‘Nicholas.’ This was an unfortunate name selection on our part, because it has caused much confusion, misfiled or misdirected paperwork, and general administrative agony over the years. Sorry, Cole. Shoulda just called you ‘Nick.’

“…but where did you get the ‘Terveti” part?” I wondered further.

I was unprepared for the answer, although Cole took it completely in stride:

“Oh…it was a bastardization of the Finnish word for ‘welcome,’ he submitted. “I made it up.”

For a second I reeled under the horrified misunderstanding that he was questioning the legitimacy of his birth status. Then it dawned on me that what he was saying was that he had altered the original spelling and pronunciation of a word for his own purposes. IN THE SEVENTH GRADE. IN THE FINNISH LANGUAGE. WHICH NONE OF US SPEAK.

I laughed so hard. He looked at me with benevolent indulgence, as he always does when I burst out laughing for no particular reason.

He was probably thinking I'd been sitting out in the sun too long without my hat, or I was off my meds again or something.

My point in sharing this little tale, in addition to celebrating the enigma which is Cole, is this:

People on the autism spectrum are often accused of having a ‘flat aspect,’ meaning an emotionless expression. Neurotypical people may misinterpret their appearance, thinking they look like a dullard. They are anything BUT. In my opinion, there's something going on in their brains that is akin to a huge power surge. So much neurological energy is being directed into a whammy of a thought that it’s like the lights dim on their expressions.

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So if you see a loved one who is on the spectrum looking particularly ‘out of it’ or disconnected, wait until they begin to look alert again, then ask them what they were thinking. You'll be glad you did.

I knew an older man who ended up with over 40 years of sobriety before he passed on. He once told me that late in life he was diagnosed with severe ADHD. Back when he was young, no one had any idea what ADHD even was. So instead, he was labeled lazy, an underachiever, and dumb. Especially by his own high achieving family.

In reality, he was actually extremely intelligent; his undiagnosed neurodiversity was just getting in his way.

At some point in his early twenties, he drank a beer with some friends. To his amazement, the mental fog started to lift! It took the edge off his constant anxiety! This was amazing! Finally, he could think a little more clearly! He had a second one. He felt great! He was sharp, funny, and not mentally exhausted!!!

My friend got away with this for a surprisingly long time. It was like ADHD meds before ADHD meds existed. He got away with it until he didn’t. Eventually, two beers wasn’t cutting it. He needed another one to get the same effect, much like having your dosage raised on a prescription when you have taken it a long time.

It’s worth mentioning that alcoholism did exist in the man’s extended family. I mention this because I personally believe that some people have a genetic tendency towards alcoholism. That’s why some people can be heavy drinkers, but maybe not be alcoholics because there’s no compulsion. This is my unscientific opinion, but I have heard stories to confirm this hypothesis probably a thousand times.

Very quickly, the man’s much improved life took a u-turn. All havoc broke out. He lost his job, his marriage exploded, he got in trouble with police, and he had alcohol related medical problems. He ended up in worse condition than when he was roaming through life with ADHD-induced brain fog and anxiety.

He tried to get sober on his own, because the idea of being in Alcoholics Anonymous was somehow more socially reprehensible than being an active drunk. He was told he just needed to talk to his pastor and pray more. Eventually, beaten, he went to AA. He was what is called a ‘one-chip wonder,’ in reference to the plastic chips, like poker chips, that are given out to celebrate becoming sober and maintaining sobriety. After his first AA meeting, he never went back to drinking. Although his massive brain fog returned, probably made even worse by his years of drinking, he persisted and built a sober life he was proud of. He worked again, remarried, had kids, and undoubtedly saved hundreds of lives through sharing this exact story with anyone who would listen.

He did eventually seek medical help and was prescribed ADHD meds, which he said helped markedly, but only some of the time. Sometimes that damn fog was there again anyway. “You know,” his psychiatrist said, “your brain would probably have worked well on about two beers. If you had only stopped there.” He knew all too well from experience when struggling with brain fog that one or two beers would clear his head. He also missed the taste on hot days after mowing the lawn. But he never again drank another beer.

I too experience horrific brain fog at times, and I also used to clear my head with a glass of wine or two. Or three. Even though I do take psych meds that help, at times I am still hit with that fog, usually at the most inopportune times. Wine tastes better than psych meds, but I know this is not the rabbit hole I want to go down. Even at the expense of people thinking I’m an idiot, have dementia or am socially uptight.

Some people in this situation reason, “maybe now that I am on the psych meds, maybe I can drink like a normal person.” I tested that theory. Nope. As the saying goes, “You can’t turn a pickle back into a cucumber.” You have the brain you have, and you’ve done further damage to your brain and body through drinking. There’s no going back.

I’d love to say that the only reason I drank was to fix this weird neurological problem. I can’t let myself off that hook. I had fun drinking. LOTS of fun drinking. Until I didn’t. I somehow escaped the usual consequences, no divorce, no legal problems, my liver survived without serious damage. But I quit because I was “sick and tired of being sick and tired.” And though people ar

ound me were pretty mum about it, I know I was a pain in the @ss. Sorry to all those who lived with me or crossed my path. You know who you are. Not to put too fine a point on it.

So, for whatever it is worth, if you’re out there and have ADHD, Autism, or any other type of neurodiversity, be really darn careful about the booze.

So There’s That.

His autism presents mainly as some social quirks/endearing habits. Otherwise he’s a pretty normal, but awfully smart guy. His knowledge base outgunned mine by about the time he hit third grade. But he’s very patient with me, and gives me a lot of grace.

This morning:

Me: “Oh look, Cole! A baby squirrel! That one looks like it just hatched!!!”

Narrator: The mom here does in fact know that squirrels don’t hatch from eggs like chickens. She was trying to employ a feeble metaphor. Spoiler: it’s about to fall flat.

Cole: “MOM. {…he sighed, summoning up the patience of Job…} a squirrel is a mammal, therefore placental. They are born via live birth. The only two exceptions to this fact are the playpus and 4 species of the echidna. So by process of elimination, the juvenile squirrel does not hatch from an egg.”

Me: {…pausing to Google ‘echina’…apparently it is some variety of spiny anteater.}

“Do tell, Cole! I never knew that! I’ve learned something new from you today!”

Somewhere in the dark corners of my imagination, Cole has just morphed into a nun in a habit, smacking me with a ruler. And I didn’t even go to Catholic school.

We really have got to get this guy on a trivia game show. He could secure our retirement. As long as he didn’t pick ‘Sports’ as a category. 😆

In this instance, eliciting this response from Cole was accidental on my part.

But sometimes, just to liven things up, I like to play games with people who are much smarter than me, such as Cole. I call the game “Stump {{…insert smart person’s name here}}.

If I can bring up a topic they know nothing about without Googling it, that’s one point for the Home Team (aka ME). If they already have extensive knowledge of the subject, that’s one point for them then.

It is a bad idea to play more than three rounds of this game consecutively, because they’re bound to get onto you if you push it.

And if they ever figure out what you’re doing, they will never play again, and you’re left having to seek out fresh meat.

Overwhelmingly, with Cole the outcome is usually Mom = 0; Cole = 3.

I am hoping hubby Chris doesn’t read this blog, or else the game will be dead with him going forward. Ooops.

Bonus content - stupid joke about hatching:

A mother Chameleon was so overcom

e with joy when her eggs hatched that her camouflage dropped.

Looking down excitedly, she exclaimed, “I’ve become apparent!”

“Swedish death cleaning (döstädning) is a decluttering method historically practised in Sweden. It is a simple living practice, encouraging people to get rid of belongings before death to spare loved ones from having to manage them.”

Contrary to common belief, Swedish Death Cleaning (SDC) can be practiced at any age, even by people still in good health, who just want to simplify their lives.

A friend and I joke that we are practicing this method of decluttering, but we really should actually read the book to be sure we're doing it correctly.

Those in recovery routinely do a mental version of SDC, but they refer to it as doing a ‘moral inventory.’ Basically, this practice involves evaluating your choices and behaviors, and contemplating the effect they may be having on yourself or others.

[Note: some of you non-drunks may do this too as a part of a spiritual or religious affiliation. You guys aren't perfect either. 😆]

It occurred to me today that there are an amazing number of parallels between the two philosophies.

Three of the guidelines my friend and I use when decluttering

are as follows:

1. “If I saw this item in the store today, would I buy it?”

   Parallel: “Is this behavior really what I want to be doing?”

2. “Would I pay money to store this item so I could keep it?”

   Parallel: “Is this thought/behavior/habit worth giving free rent in my head?”

3. “Would I grab this item (Parallel: thought/behavior/habit) if my house (Parallel: Life) was on fire?

If the answer is ‘no’ to any of the above, get rid of it.

Those of us who are parents of adults with autism need to add one more:

“Have I been holding onto this (thought/item/behavior) for decades in the hope of a miracle? If a miracle ever actually occurs, could I get this type of (thought/item/behavior) back if I needed to?

If that one's a YES, get rid of it.

I feel his pain. I too do insane things all the time. Like yesterday I said ‘pirate’ when I meant ‘pilot.’ Arrrrrh!

But that might have been partly because I'm still missing one front tooth and it causes me to lisp a bit. THWELL!!!

Yesterday was Easter. Usually a day that includes a ham dinner or big brunch. Neither Chris nor I had much energy, so we settled on a pizza with ham and pineapple, which is sort of Easter-y.

This morning I was on a zoom AA meeting. One lady mentioned that when she first decided to get sober, she would think ahead to future holidays such as Easter and Christmas, and wonder how she could get through them without wine. One of her biggest worries was how she would get through her son's wedding without toasting the couple with champagne! Nevermind that her son was a teenager without even a girlfriend at the time. 😆

She thought of a clever mental strategy to head these thoughts off. She would simply substitute the word ‘coleslaw’ for the word ‘wine.’

“How will I get through John’s wedding without any coleslaw?” One coleslaw will be too much, and a thousand won’t be enough!!!” 😆

Thinking of it this way brought to her attention how silly that thinking is.

And that type of thinking is dangerous, because it leads to the thought, “I will just wait to quit drinking until after {{Easter/Christmas/John's wedding/summer solstice.}}

There's always another event coming up on the horizon, so you just keep drinking.

I'm sometimes asked if I became an alcoholic because of coping with my children's autism. Absolutely not. Plenty of people deal with far more difficult situations without drinking excessively. Or, they may drink a lot of alcohol, but not really be an alcoholic. The compulsion is not there.

The truth is, I think I always had a brain that was wired for ‘more.’ If one thing is good, two things are better. Especially when it comes to glasses of wine! Even if I had never had a sip of alcohol, I probably would have had that same type of ‘alcoholic thinking.’ I may have overdosed on chocolate, but that wouldn't really have messed with my head as badly as alcohol did.

I guess we will never know.

But I will say this; if you are an autism parent out there saying to yourself ‘I will cut back on my drinking once my child is verbal. Or potty-trained. Or I have more support,’ you're fooling yourself. No you won't.

And you aren't doing your child nor yourself any favors by entertaining that fantasy. In fact you're probably making life harder.

This occurred to me when I was listening to ‘Dungeon Crawler Carl,’ in which Carl's cat suddenly becomes able to speak. The cat immediately filled him in on all the various people his girlfriend had cheated on him with when he wasn't home. 😆

But I digress. Back to autism and communication…

It's easy to forget sometimes that non-speaking doesn't mean non-hearing, nor non-understanding. Who only knows what top secret information he has stored in that complex brain of his. Blackmail fodder!

One of the things that I could never understand about Tyler is that he is definitely more capable of communicating with us than he actually does. I suspect

this may be the strongest indicator of his superior intelligence, considering his audience is, well… us.

It comes down to a matter of motivation. If he wants something badly enough, he'll get his point across.

As an example, the other day Ty and I were at the doctor's office for his annual check up. We were both bored sitting in the waiting room. So I offered to let him text his Dad. I do this with him sometimes. Half the time he isn't interested at all. Other times he will type a rote phrase or a random group of words that don't, as far as we can tell, really convey anything.

But sometimes he does type something that makes sense. On this occasion he typed: “Dad 5 vanilla white ice cream.” This meant something! I knew his group house had been out of his beloved cups of white ice cream for a few days; possibly because he may have been eating five of them in one sitting.

So I promised I would pick him up some ice cream cups at the store before he went back.

If he can type to communicate like that, why the heck doesn't he do it all the time? Over many years, a small army of speech therapists and assistive technology consultants have presented him with iPads (with and without the familiar ‘PECS’ pictured), lots of different apps, and something called a ‘Vantage Lite.’ The Vantage Lite was a communication device that weighed as much as a large bowling ball. I can't imagine what a ‘Vantage Heavy’ would have weighed!

Ty writes words on paper. He can type words on a laptop. But it seems like he simply chooses not to. He does have a handful of meaningful (to us) words he commonly says or writes like ‘pizza’ and ‘Chick Fil-a.’

Priorities. 😆

Thank God for his group home and day support helpers.

But invariably, something comes up that reminds us that no one knows him and understands him better than his parents. Especially when it comes to communication.

Exhibit A:

Me: “Hey Ty, do you want a couple waffles for breakfast?”

Ty: “No. No couple waffles for breakfast, no.”

Me (in my head) {{DAMN. How could I have forgotten to buy Krispie Kreme donuts?? (Ty has come to expect being spoiled rotten when he is home.)}}

Me: “How about some peanut butter toast?”

Ty: “No. No peanut butter toast, no.”

Me, looking through the pantry and contemplating making chocolate chip muffins: “How ‘bout some muffins, buddy?”

Ty: “No. No muffins no. Waffles.”

Me: “WAIT. Now you DO want waffles after all??!!!”

Ty: “Waffles, YES. FOUR waffles, yes. Peanut butter, yes”

Finally I understood. How could I be so dense? I asked him if he wanted a couple waffles. He did not. He wanted four waffles, not two. With peanut butter on them.

Me: {{FACE PALM!!!}} OBVIOUSLY.

So I filled his order and delivered exactly four waffles with the right amount of creamy peanut butter on them, toasted to the correct crispness.

Happy to do it. But it troubles me that it takes so much effort to communicate with him. And I know at the group house his helpers really do try. But at breakfast, for example, they are preparing food for all four residents, two of whom have special dietary needs (gluten free, diabetic, allergies (luckily not to peanut butter)). Two of the residents are fairly self-sufficient, and can even help a little. But another one must be spoon-fed, and the 4th one is, well, Tyler. He can definitely do some stuff for himself too, not to sell him short. But he could not exactly have majored in Communications in college.

But on the up side, they do know his preferences, and he gets Chick Fil-a, courtesy of us, almost every single day. We buy it in bulk and deliver it in bagged portions to be frozen for future meals.

So let's just say, a few people in this world have it harder than Tyler.

I try to remind myself of this whenever the inevitable “group home mom” guilt starts to set in.

Have you ever been old-school filing papers in a file cabinet, and this one file always seems to get caught whenever you try to close the door? Until the tab of the folder gets soft and bent from being caught on the drawer in the same place all the time?

For some reason, no matter how you tuck that one in, or rearrange the ones around it, that one keeps sticking up somehow?

If so, you know exactly how it feels when my brain revisits past upsetting occurrences. Experiences I wish hadn't been stolen from my children as a result of their autism.

Things that happened, or things that didn't.

I really do try not to dwell on the past. But those darn folder tabs keep sticking up and getting in my way. I can keep them out of my conscious memory, but then they pop up in my dreams.

Some say that parents of those with severe autism suffer from a form of PTSD. I used to scoff at this, imagining myself cowering in a foxhole being shot at. Come on, life wasn't that hard, was it?

Maybe not in a life-or-death way, but we are fighting a war that never ends, and years went by without much furlough.

I did not come up with this file cabinet allusion on my own; a wise friend once brought it up to describe her own jammed psyche.

“It's like I want to take some of the mental file folders out. Or get a bigger cabinet,” she said.

We agreed that wasn't really going to happen.

Months after that conversation took place, I spoke to that friend again. The filing cabinet topic came up. She said she had had some success in ‘tucking her tabs back in.’ Her method involved thinking the painful memory or thoughy all the way through. “Playing the tape all the way to the end,” for those of us old enough to remember playing cassette tapes. Ouch.

Then mentally rewrite the story. Imagine your child actually being able to do the things you feel they in particular missed out on. Like going off independently on a bike with friends. Going to a dance with a date. Going to college. Whatever your person was not able to do. Then picture them actually doing these things, and enjoying them.

“But that will just make me feel more sad!” I insisted. “Just try it,” she suggested. So I did. My first couple of attempts did indeed make me feel sadder. But over time, I realized something. At least in my particular case, I had a really hard time picturing my son enjoying these things. It just didn't seem like ‘him.’

This led me to realize that the pain of these memories had more to do with my projecting my own feelings onto him. Maybe I wanted these things for him more than he wanted them for himself. After all, aren't there people out there who do not have autism but do not enjoy these things either?

In the case of someone whose autism greatly affects their life choices and experiences, the autism is a big part of who they are, and what they enjoy.

Maybe I just need to let my son be himself and enjoy whatever he naturally enjoys. Who knows, maybe he is thinking, “I wish Mom had something she enjoyed as much as I enjoy stimming.” I doubt it, but who knows?

I'm sure some readers are thinking, “But there are opportunities for people with autism to do these things. Like the ‘Night to Shine’ dance. And special sports leagues.”

Believe me, we tried it all. In the case of one of our sons, attending these events seemed to bother him so badly that he appeared to be in physical pain. Or would not even go in the door.

His aversion seemed to increase markedly as he got older. Simultaneously, we also got correspondingly older and had less and less energy to attempt to get him out to try new things.

Luckily, he has people half our age at day support and his group home who pretty much meet him where he is, but also occasionally get him to stretch beyond his boundaries just a bit. We all need that.

So my friend was right. Certain tabs in my brain don't get stuck in the drawer quite as often, or are as difficult to tuck back in as they used to be.

It's a work in progress, and of course some new troublesome file folders are occasionally added. Not at the rate they were added when my sons were young, though. But they're getting easier manage. And once in awhile, I encounter a file that I think is gonna stick badly. But it tucks right in and doesn't give me trouble. Priceless.

The last few months as I've been laid up, I've taken to listening to a lot of podcasts. I can be a cheap sucker, so for most of them I listen free. This means I suffer through listening to a lot of ads.

I usually zone out through them, but one caught my attention. It was an ad for using GO FUND ME, which most of you know is a business that helps people set up funding for charitable causes.

I heard my triggering ‘A word,’ autism. Per the ad, someone had used GO FUND ME to successfully raise money for an autism mom in need. She was fired from her job for missing work to care for her child with severe autism. She couldn't find adequate caregivers for him.

All well and good. The ad celebrated the fact that $10,000 had been raised in just three months.

Don’t get me wrong, I think that’s great. But honestly, in the whole scheme of things, $10,000 is just a drop in the bucket when raising any child, not to mention the extra expenses incurred from supporting someone with special needs. Especially if one can't work longterm due to their child's needs; or constantly has to jump through ridiculous hoops to secure childcare.

There needs to be a better support system than that. Anything I can think of seems so far out of the realm of possibility that I can't even suggest it.

Any ideas out there? If so I will document them in a blog soon.