A lot is said about bringing “sexy” back, but maybe that’s not the problem…

I think I’ve seen just about every female celebrity twerking, or flashing her toned ass online.  I’ve seen, regrettably, Heidi Klum boasting about her love for nudity.  I have seen Emily Ratawhatever in every degree of nakedness known to mankind.  I’ve run into Kim Kardashian’s sizable rump, Khloe Kardashian’s nipples peering through a sheer blouse, and Kourtney Kardashian embracing her son with her nearly naked derriere pointing towards the camera.  Mothers cannot seem to embrace their toddlers without showing their cleavage (even breastfeeding has been elevated to “I am strong, I am invincible, I am woman…” in a way that, quite frankly, I don’t get.  I breastfed for FOUR YEARS, and no one ever really noticed when I did it in a public place…because no one likes being stared at while they eat.  That was my logic anyway.  I don’t think it deflated my powers as a breastfeeding woman to be discrete, but what do I -a currently middle-aged prude- know about that, right?) There is also the long list of young girls with pierced nipples, pouting lips, toned tummies.  It’s all empowering, supposedly.  It’s everywhere.  The little girl from Modern Family posed on the beach with her bikini bottom so low-slung that it looked like we’d be able to confirm how well she waxes her nether regions.  No one seems to own a bathing suit that covers anything more than the crack of their butt.  I suppose that fixes the issue with sand in your pants, but it really is getting tiresome seeing women of all ages trying to prove that their bodies are worth a view.

If that is sexy, we have more of it than we really need.  I say let’s call a moratorium on it, and let’s bring something else back…being actually nice to each other.

I am about to say some really trite things, and I hope you will bear with me…  I don’t want you to think that I’ve become some sort of spineless creature, but I am really sick and tired of the meanness that I see (yes, see…and hear) everywhere.

I don’t really know where it started.  We can go back to shock comedians who spoke their mind; we can take it to Lenny Bruce, George Carlin, Don Rickles…and we can say “that’s where it stared.”  The thing is this: those guys were smart, and they were direct, but they were not mean.  Maybe I’m wrong about this, but none of them (or their humor) inspired me to be crass and inconsiderate.  Blunt?  Maybe.  Mean?  No, not really.

Why am I saying this?  Yesterday was rough.  Many websites (supposed “news” websites) kept flashing pictures and videos of Kathy Griffin’s and Tyler Shields’ stunt with a supposed Donald Trump “severed head.”  It was unpleasant.  It was unnecessary.  It was shocking and, quite honestly, it made me feel bad.

Furthermore, I had to actually turn off the computer because if I tried to check the news, there it was, and I didn’t want J to see it.  I didn’t want to see it either, but between the stunt, the apology, and the backlash it was (until I said “no more”) hard to escape.

We see, more often than we should, videos of people beating each other up, attacking each other, bullying each other, throwing public tantrums.  Then we witness the comments: people insult each other with either “libtard” or “Trumpster”, and that’s just the kinder sliver of invective.  It gets worse.  The anonymity of the internet allows for all sorts of shameless abuse that feels liberating to those issuing it.

There was a time when our society was angry and proactive.  There was a purpose to the anger.  Now we’re just angry, and we take it out on each other.  We feel outraged by anyone who doesn’t agree with us, and the response is usually potent, concentrated, vicious.  The same reckless abandon that is displayed in exposing bodies left and right and calling it “empowerment” is applied to expressing opinions with no filter or consideration and calling “freedom of speech.”

I am all for both, but I am also for taking a step back and asking “is this the way to do it?”

Dada’s job search has taught us a lot about the way the world is now as opposed to the way it was six years ago.  Yes, a lot has changed.  We didn’t realize how much, but it has.  There are job boards all over the internet, and it is “easy” to apply for jobs there.  You basically upload your resume and then you re-enter all the information into the forms that each employer uses.  Your information then disappears into some sort of limbo where, if you don’t strictly represent very specific parameters, it will never be looked at by another human pair of eyes.

I don’t say this out of bitterness.  Dada has had a fairly good response from people (actual humans) who reviewed his qualifications.  But all the electronic layers of filters and sieves will overlook the human behind the verbiage.  And this is, sadly, everywhere…

Have you noticed that more stores have self-checkouts now?  You don’t have to interact with a cashier if you don’t want to.  Have you seen how many flavors of pre-packaged chips there are?  We counted six or seven when we were growing up, and now the chip aisle is as long as our kitchen, and multilayered. You can also have your own Keurig or Nespresso machine at home so you can have your latte, but never encounter a barista ever again.  Never mind that it doesn’t taste the same, or that actual coffee bean bags are being replaced by those little cups at the store…you can have that at home, and not interact with humans.

I am not a fan of people.  That is: I am introverted and have trouble behaving in a way that isn’t awkward when in social situations, but I still have manners, and I hope others will have manners, too.  My idea of social interaction is not the one that I see out there: you either agree or disagree, and react accordingly, or you “present” like a baboon in heat and expect people to hit “like.”

It seems we have forgotten that we are, essentially, dealing with other people, human beings like us, and that they have fears, concerns, frailties, senses of humor, feelings just like we do.  We seem to have forgotten that we used to live outside of shock value, outside of Facebook, Instagram, Twitter.  We used to all populate an actual plane of reality where our feet touched ground and we had to look each other in the eyes after saying or doing the mean thing.

Can we please bring that back?  Can we stop worrying about freeing the nipple, and start worrying about whether we just scared a kid who is not as sophisticated as we think all kids are?  (Barron Trump, it has been reported, was scared by the image of what appeared to be his father’s severed head.  People doubt this.  People assume being eleven is tantamount to being a world-weary fan of Tarantino who has seen it all and feels nothing.  This, I think, needs to stop…eleven year-olds should be allowed to be as naive as eleven year-olds are.  Otherwise, let’s just start handing condoms, Hustler, Jim Beam and unfiltered Camels to all nine year-olds so they are ready when “being eleven” rolls around.)

So that’s today’s rant.  I apologize if you disagree, but that’s the way I’m feeling today…after skulking back online trying to dodge video of the latest “graphic video” that has replaced the last “graphic photoshoot” that made me cringe.

No,  I know I don’t “HAVE” to look, but…does that mean that you have to hide if you want to live in a kinder world?

 

 

Wild thing, you make my heart sting…

Our oldest son, always known here as TGG, got married on Friday.  Because of a disagreement we had over the weekend, we only got notice of his intention to do so via text.  Confirmation came over iMessage on Friday night…from someone who saw it on Facebook.

I gave Facebook up months ago, and actually went back on to see if there were pictures.  I’ve been blocked.  Oh, well…  I deactivated the account again.  I will not be sucked into the drama because, well, I’ve come to realize it’s really not worth it.

So we’ve spent the whole weekend wondering how we became the villains straight from central casting.  We’ve reached the conclusion that we suck so badly our entire experience raising children has been part of a delusional alternate universe we live in…

Something in the posting our son and his wife put on Facebook caught our attention.  Stay wild, stay true, stay you.  Not being up on all the youthful lingo of the hipster generation (which they claim not to belong to,) we assume that this is some sort of call to arms.  We are baffled: our son has never been wild (tattoos notwithstanding…he is possibly one of the more timid people we know,) and as for being true and “you,” well…this is the kid who used to be tremendously unique until he realized that the other kids made fun of him, and he relinquished his uniqueness so he could embrace the “generational uniqueness” that all his friends professed.

My dad used to say that what we all have in common is that we want to be unique.  More often than not it is the people who sustain the barrage of abuse from their peers who fly the flag for uniqueness.  If you sublimate, you are saying “thank you, I will blend in until such a time when I am comfortable with not sublimating.”  Our son became one more of the long line of kids who got tattoos, earrings, listened to rap or heavy metal, and acted like the world was an unjust place without ever really understanding that he was doing all this from the comfort of his middle-class existence.  He was “edgy!”  He was “rebellious!”  He was “wild.”

The results of this are two children by two different women in less than three years; a wasted semester in Nursing school; living from meager paycheck to meager paycheck, and complaining about how hard he has to work for said meager paychecks.  And, of course, the attitude that WE are the ones who have NEVER understood him.  How dare we???!!!  He just wants to be…wait for it…HAPPY!

In a nutshell, we are bad parents who don’t understand, and we bring him down.  We are lame, and that’s why we don’t understand.  I believe Busby Berkeley had a sequence in the movie set to this tune; I’m sure Cecil B. DeMille had a cast of thousands performing a scene where this was the gist of it.  Francis Ford Coppola, Lasse Halstrom, Steven Spielberg, Wim Wenders…they’ve made movies about this, I’m sure.  The entire musical history of the Sixties, Seventies, Eighties, Nineties, and so on and so forth has documented this feeling…

Parents of young adults who think they are entitled to whatever it is we do for them: we had it coming.  We suck.  We had best sit here and accept that we failed.  As they raise their iPhones in the air, shake their fists on Instagram, Twitter and Facebook to protest our lack of understanding, let’s take a moment to look deep inside and see the swamp in which our lack of parenting skills is steeped.

We wanted him to get an education.  We never demanded straight As; when he wanted to be an actor, we encouraged him.  He liked to draw…I have lost count of how many sketchbooks, pencils, materials we’ve bought over the years.  He had a guitar, a keyboard.  He was interested in them for about twelve minutes in total.  He wanted to learn swimming, be a Cub Scout, play soccer…we acquiesced.

He wanted an earring.  He wanted tattoos.  He liked to dress like James Bond.  He wanted girlfriends.  He wanted to not be subdued by parental demands for academic excellence; he almost didn’t graduate high school because of his grade in Baking.

His first car, granted, was a Saturn, but then he had other cars.  Against our better judgment we allowed the Playstation, the Xbox, the GameBoy, and the countless hours that were necessary to become well-versed in all sorts of games.  When he wanted to get a job, we signed the paperwork so he could work.  When he graduated from high school (I think his Baking teacher simply didn’t want to deal with him over the summer,) he traveled to NYC with his friends, and went to see plays on Broadway.  When he was sixteen we bought him a suit, shirts, ties, shoes at Men’s Wearhouse.  They weren’t cheap.  He also had a video camera; he was going to be…wait for it…a filmmaker.

When he knocked up the first girl we were supportive.  Disappointed at his lack of precaution, but supportive.  We made an overture, and his child would come visit.  Then he hooked up with another girl, and away went every illusion that school was a priority.  And then came the second kid.  And now he’s married.

In the interim we’ve bought tires for the car, a bumper, paid handsomely for chores that I could have done myself for free, filled his freezer, and so on and so forth.  When I called him out for saying something callous about my mother, that was the end of it for him.  How dare I misinterpret something that he, and I SHOULD KNOW THIS, didn’t mean that way!!!!

Yeah, you know…I probably overreacted.  My mother is old and frail, and -at my relentlessly advancing age- I am struggling with the understanding that being parentless is not too far in the future.  That I will lose whatever link there is to my childhood, to understanding why my mother never quite “took to me” is not easy.

On top of that, my friends, my body’s aging is causing mild-to-moderate health issues.  And I have to, in the midst of this, prepare for the next stage in our lives, and deal with being J’s primary caregiver 24/7.  I could have been a little less angry, but non-apologies and arrogance are something I have very little patience for these days, especially when they come from someone who flatly refuses to meet us halfway.

In light of that, we have decided to embrace our status as bad parents, and we are baffled, but we are accepting.  We know there will be whispers, and gossip. The world thrives on that, and we could address them directly and call out our son in all the public forums he has made his own, but we don’t have the energy for that.  We have places to go, and things to do.  We won’t drag J into it…J doesn’t deserve that sort of shit.

“Stay wild.  Stay true.  Stay you” he posted.  We hope they are happy.  Life can be long, or short, but it will always -inevitably, mercilessly, relentlessly- be full of surprises, and wicked turns.  We have done all we can, and we will take this stinging sensation elsewhere, and there we will recover.  And we will find  a new way of being proper selves because WE have always been wild, true and very much us.  Unrecognizable to our son, who has led a life of privilege without even realizing it, but wild, true and very much us nonetheless.

When I married the absolutely inappropriate man the first time around, my parents were present.  They were not thrilled, but they were there.  They looked mildly horrified and resigned, but they were there.  So were our friends and family.  I made my declaration of independence, my grabbing-life-by-the-balls very public.  Every choice was bold and misguided, but I was proud of the fact that I was fucking up in my own terms.  When Dada chose to marry me, he did so boldly, proudly, even in the face of people thinking “what is he doing?  He’s marrying a woman with a child who has Autism???  What a moron!!!”  We had witnesses; we were thrilled at the community spirit of our declaration of boldly going into the great unknown together.

We managed, somehow, to raise someone who declares his independence through Facebook and text message.  Ah…this generation.  Selfies, but no self-assuredness.  Go figure!  “I take thee, and we become we…we must change our Facebook relationship status.  Take THAT, bourgeois parents!!!!  We are wild, free, true…”  Whatever…  Sigh….

Wild middle-aged parents of the world, UNITE!  We did our best.  It’s time to move on.  🙂

Well…it’s Wednesday!

As Lin-Manuel Miranda’s Thomas Jefferson so aptly puts it in Hamilton “the sun comes up, and the world still spins.”  Contrary to popular concern, we didn’t dissolve into stardust while we slept.  It might FEEL like it, but here we are…

Yes, ladies and gentlemen…the colonoscopy is over and the results are in…polyps.  We go back in four years to see how things have developed…there are things we can do to deal with this and make it better, but keeping to a healthful diet, etc. doesn’t always come easy.

To paraphrase Mr. Miranda’s lyrics one more time: Can we get back to real life?  The same problems we had yesterday we have today.  It might not seem like it to some, but THIS is the real world.  The election was real, but it works on a different level of reality.  How many of us will be screwed over or will benefit from the result is yet to be seen.  So we move, unenthusiastically perhaps, on…

J is calm-ish today.  He wasn’t so much last night.  An unexpected call from Dada’s office came in during dinner.  J’s eyebrows arched as he saw the change in demeanor from everyone else around the table.  Dada went into work mode, and nothing I could do to mask the development helped.  Is this why Bruce Wayne has a Bat Phone?  That way the urgency of the call is masked by the fact that it rings elsewhere in the house?

Of course, the phone is a problem regardless of what I try to do about it.  Full disclosure: cell phones are turned off when we are home.  Our landline is IT.  And, yes, we screen calls.  We answer for TGG, the doctors’ offices, a few non-stressful relatives, and Dada’s work.  If a person has been identified as a stress factor who will alter the mood for any or all of the key players, they will not get through to us.  They can, if they are so inclined, leave a message.  If the message is basically wheedling, needling, nagging, inciting an excessive and unnecessary emotional response, we will not return that call.  If the person leaves a message that is derisive, insulting, angry, melodramatic…no call will be returned.

Yes, we are chicken shits.  Yes, we like it just fine.  Yes, we know we’re assholes.  Yes, we can totally live with ourselves.  Is that what “narcissism” means?  Putting J’s peace of mind and well-being first?  OK, then…narcissism it is.

Last night we put J to bed (after he had a meltdown in the shower shortly after the unexpected phone call,) and went to bed ourselves.  Dada fell asleep.  I read and checked the election results occasionally.  By the time I decided to turn off the light the result was glaringly obvious.  At that moment I decided that the only way is forward.  I have no control (I did until my vote was counted) over what comes next outside of these four walls; in fact, I have little control over what comes next within them, but what little agency I have in this particular environment I will use.

Our plans alter a little.  We now have more to think about because, let’s face it, the mood in the country has shifted to some dangerous expressions.  We are all on tenterhooks, sensitive, scared, worried.  We have reason to be.  The democratic process hasn’t quite lived up to its hype this time around; anger and recrimination have become the two basic food groups, and we all look at each other with our eyebrows knotted into question marks.

What do we do now?  We keep going.  In spite of the stress this might be causing, we stay focused on the important things we face every single day.  We have to move past the headlines long enough to look around at what is ours every single day. We go back to the business of being alive and living.  That’s all there is to it…

For us that means continuing our efforts to help J work through whatever is causing him issues.  We cannot relent, and we cannot get distracted from our purpose.  We will, as we have been committed to doing as long as J has been around, fine-tune, adjust, refocus.  We will continue to dodge the phone calls that are counterproductive to what we’re trying to do here.

At the end of the day, or the start of each new one, we have choices to make.  Yesterday a panoramic picture was taken, and the space each of us, our family units, takes up in it is very small.  We like to think it’s bigger, but it’s not.  In the end, the people we put in office (at every level) have more say about what happens than we do, and we have to stop fretting about it until we get the next opportunity to have our say.

I have a say on my phone, my home, my circle (a very, very small one) and I will not give up on that say.  The rest will happen whether I want it to, or not.  People don’t like that.  People don’t lie that I have a say and exercise it freely, but -again Lin-Manuel Miranda speaks for me as I paraphrase him: I have no control who lives, who dies, who tells my story.  

That doesn’t mean I’m not going to write the version that works best for us, and for J.

Peace out…democracy still lives.  It is far from perfect, but it lives…

 

 

 

Oh, a little better and a little worse…

In a week we have gone from senseless SIB to a more moderate approach.  We actually had one full SIB-less day.  It was short, but it was also truly lovely.

This is all, we suppose, anxiety over some unnamed event, incident, feeling, concern, fear, perception that J cannot express clearly.  That’s what the amount of band-aids J has been using tells us.  He made over 20 packets (half of them the green with the seven strips, two of which go to his forehead, and half of them the red that only has five for thumb and fingers…) and he’s down to about three.  This is since Sunday…that is a lot of bandaids.  On Monday I ordered a ridiculous amount of bandages from an online medical supply outlet, and they were delivered yesterday.  The logic behind this (aside from making people wonder what the heck goes on in our household) is that if we have more than we need, we will need less.  The same logic that applies when one keeps the ER-ready bag with extra blankets, clothes, etc….if you’re packed, you won’t go.  If you don’t pack, the kid will be so sick that you will have to reupholster your car.  J opened the box of boxes of bandages and his reaction was similar to the happiest child on Christmas morning.  Go figure!

In the middle of all this head-hitting I’ve noticed that J shakes his head as if to stimulate himself.  It’s not a strong shake, nor is it consistently there…it just, once in a while, happens when he’s done hitting himself.  I was telling Dada that, as a child, I used to do that if I felt a bit of a headache.  I wanted to see if it REALLY hurt.  (Hey, no judging…I was a weird child, and this has been firmly established over the time I’ve been writing this blog!)  It’s almost as if he wants to make sure he has hit himself hard enough.  He doesn’t say it hurts, but when I’ve offered him liquid acetaminophen, he’s accepted the dose.

It could be, maybe, that his wisdom teeth are coming in.  It could be that he is just overindulging in the self-stimulation that is all too common in people with ASD.  It could be that he is upset.  We just can’t seem to figure out EXACTLY what the root of this is.

Right now, as I type this, I can hear him giggling as he listens to music and looks at the cute little spider that is frozen on his TV screen.  Last night we finally got his helper to stay with him for a while.  We had hoped to do this on Saturday, but he was too over-stimulated for us to feel comfortable leaving her alone with him.  Instead we stayed home and focused on him, and he slowly leveled off nicely.  Yesterday he was happy to see her, eager to see us leave, and was deemed only “slightly obstinate” in a text message response to my query about how he was doing.  He was happy to see us come home, and there were no demands for extra pay, and she didn’t run to her car as if in fear of being followed.  Of course, she might have been playing cool.

So…definite semi-progress.  We are trying our best.  And we have acquired what we refer to as Def-Con J boards from the lovely people at Amazon.com.  Of course, these are really Autism Supplies And Developments PECS Feelings Boards, but it’s more apropos of the absurdity that is our day-to-day life if we alter them to have mustaches, goatees, and full (ok…somewhat sparse) heads of hair to help him recognize himself, and we call them Def-Con J boards.  What can be more effective, when out on errands, to get a text from the helper saying DF5?  You will leave your cart in the middle of the store and run out while yelling beat to quarters, and you might be black-listed at that particular store, but you will know what to expect as you pull up to your driveway.

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Now, of course, I’m working on getting J to understand that he doesn’t ALWAYS have to be HAPPY.  SAD, FRUSTRATED, MAD are totally acceptable feelings if they are expressed and we are allowed to help him work through them.  I know, I know…too abstract a concept?  Maybe?  Well…it has to be taught.  J shouldn’t feel pressured to ALWAYS be happy.  J should know that we love him no matter what, and we want to help him through whatever is bothering him, and being upset is totally fine.

There you go…

Thursday…

We plod on…

with the occasional bounce inserted for good measure…

A little rant on a Thursday…

Please, bear with me…I know I’m going to come across as a horribly old, cranky, not-with-it person, but I do have a point.

Raise your hand if you have a child, or are close to someone, or actually have ASD.  OK…good.  Present and accounted for, and I should have waited until AFTER my shower AFTER our run to raise my hand, but that’s neither here nor there.

Every single day, as J’s parent and primary caregiver, I work with him to make him more socially functional.  This is, as you know if you raised your hand, not as easy as it sounds to those uninitiated in the intricacies of ASD.

J has been taught when to say HELLO, and still has to be reminded.  His response to HELLO is something he has learned through effort and consistent repetition.  HELLO means to him something he does to fit into a social scenario.  When it does happen spontaneously, it is quite lovely, and we make a huge deal of it.

J has also had to learn that eye contact (while disturbing and difficult for him) is something other’s expect, and we encourage it when he feels comfortable with it.  We have also taught him to respond to his name; he knows when he’s being addressed, and we expect him to show a certain degree of attention, even if it’s only for a very brief moment.

We don’t expect J to be a walking, living, breathing example of Emily Post’s etiquette, but we do expect him to behave closer to what is considered acceptable social behavior so that others know an effort is being made, and so he will feel more a part of his social surroundings.  He is NOT, by any stretch of the imagination, a trained monkey, and we know that there are moments when his social behavior will be contingent on other stimuli that he cannot process in a way that satisfies others.  We do, however, expect him to ask for HELP and ESCAPE if he’s feeling overwhelmed and that, as you know if you raised your hand, is a significant social consideration towards others.

And here goes the rant…

Our tall, handsome, burly son is looked at like a weirdo when he displays any degree of antisocial behavior “out there” in the world.  People look out of the corner of their eyes, once in a while you can see they’re commenting, and they react as if J has committed some horrible faux pas if he doesn’t act like we think people are supposed to act when in the presence of others.  By this I don’t mean scratching his but, picking his nose, chewing with his mouth open, or farting in public (although he has done that, and we’ve told him he should ask for the bathroom because it’s off-putting.)  No, what I mean is when someone talks to him, J doesn’t answer or look at them.  That, my friends, is considered RUDE by the general population…

Let’s cut through the myth of the benevolent, happy-go-lucky disabled person who smiles and is extremely friendly.  That can be true, but it can also be bullshit.  Everyone has their moments, and (if you raised your hand) you KNOW that responding to the social cues in the way people expect can be overwhelming and, at times, even physically painful.

This is my point…really, I’m getting there…

We stand in line at the store, and in front of us are countless people who are on their cellphones.  They are talking, or texting.  They barely acknowledge the cashier.  They answer curtly, abruptly, rudely.  They ignore the “good morning” or the “did you find all you were looking for today?”  The cashier might roll his/her eyes, and chalk it up to “that asshole was rude.”

Cue us getting to the register.  We are NEVER on our phones.  We try to engage with the cashier with greetings, and thank you, and what not.  But heaven forbid the cashier should talk to J and J should not engage with them.  The sourness in the face of the person who says hello to him and doesn’t get a hello back is so obvious!  We try to explain, and we encourage J to respond socially…sometimes it works, others it doesn’t.

When you tell a cashier that your adult child has ASD and is non-verbal, they might reel back the deflation they previously displayed, or they might ignore YOU.  Why?  Because the rudeness, or the lack of social skills are the result of something that cannot be controlled.  If a person is focusing on their iPhone and acting like a self-absorbed ass, well, that iPhone cost a lot of money, and they’re paying for a service.  If a person is acting self-absorbed because Autism is part of their make-up…well, how dare they????

Look…I have nothing against cellphones.  Ok, that’s not true…I think cellphones have caused a greater deterioration of social skills than any other item we carry on ourselves.  Cellphones have destroyed our ability to communicate with each other because we are so focused on that one thing that we block out what surrounds us.  People now text in abbreviations and acronyms.  People no longer know how to sit in a waiting room not looking at what they have in their hand.

Case in point: on Tuesday I went to the doctor.  I was the only person there with a book.  The people who were on their phones suddenly saw something on the TV screen that they could latch on to for conversation, and they were GOOGLING about it while talking to each other.  I suddenly realized that they were looking at me like I was the rudest person in the room because I was not participating in this ritual…because I was reading.  So my absorption in this task was rude because I couldn’t look for a contribution to make to their conversation in an item that has no capabilities for accessing information from the ether.

I will sound like an old and cantankerous old lady, but the majority of kids out there are rude!  They don’t know how to talk to grown-ups; they don’t have the basic skills of courtesy and social interaction that my generation had to learn because our parents expected us to know how to behave.  Those same kids look J up and down like he’s a freak because of the way he acts, but how different is their self-absorbed, phone-obsessed, socially-inept behavior from his?  Oh, wait…it IS different because he is not focusing on himself, and failing to focus on others, in a socially-acceptable way.

I’m sure that if J walked around with earbuds, sunglasses, a cellphone in hand, people would just say “oh, he’s just a product of his generation.”  As it stands, J is just strange and antisocial, and we REALLY should’ve done a better job helping him adapt to society…

AAAAARGH!

Rant over…thank you.  As you were.

Patience for pancakes…

This time last year we were gearing up for the start of J’s last-school-year-EVER.  We were hoping to get him back in the groove of going to bed early enough to be ready to get up bright and early on school days.  Suffice it to say we’re no longer facing that problem.  Getting up at 6:15 is a tremendous luxury we will not be able to afford much longer (other people still will generate school day traffic, of course,) but right now we’re positively loving the prospect of not being OUTSIDE at 6:15 waiting for the school bus.

J seems to have figured out that he can get up later, and still get a full day’s worth of activities.  Today, ladies and gentlemen, he came downstairs bleary eyed and stretching at 8:20.  He was happy.  He was, quite obviously, pleased that he had stayed in his room, curled up in bed, THAT long.

The young man, I will clarify, is not lazy.  Once he is up, he is a very active person.  He does chores, exercises, goes for walks…he is helpful and proactive.  He also knows that staying in bed is totally ok.

Yes, J used to be the person that was up before we were (especially on holidays, weekends, and days when Dada had taken the day off from work,) and we used to think “will this ever end????”  It has.  It is over.  Sometime ago, after the first few weeks of not going to school for the rest of his life, J figured out that it was ok to linger in bed.  He knows we’re up.  We’re not quiet or even discreet about grinding coffee and setting about the morning routine, but J KNOWS he doesn’t have to get up.

The person who used to consider Ramen noodle his equivalent of a breakfast of champions has evolved.  Not only does he THINK about what he wants for breakfast, he actually doesn’t mind if it’s something that will take a little longer than usual.

This morning J emerged from his room at 8:20, and he went about the business of his morning: getting his snacks from the garage, emptying the trash, replacing the bag that lines the kitchen trash can, setting the table for his meal, and THEN looking for his food.  Sweet potato pancakes.  J asked for sweet potato pancakes for his breakfast.  And, you know what, it took me a bit to make them because I was in slo-mo this morning, but J was absolutely cool with waiting.

After breakfast, J helped me load the dishwasher, and then he went downstairs to set his TV and iPad up.  When I called him up to help me again, he did so with a smile.  I didn’t really have to tell him much, I just said we’re doing upstairs today.  Off he went to empty all the trash cans, and then he disappeared and (I confess) I thought he had ditched me, but he suddenly returned with the trash bag in his hand, and I realized he’d been emptying the trash in the basement level.  He cleaned his bathroom, he brought water bottles from the garage, and then he waited to see if there was anything else I needed from him.

We have done several things together, but we’ve also kept busy on our own.  We go for walks to take trash, check the mail, or just to walk.  We check in on each other.  We have lunch together.  We have adjusted the schedule so times are not set in stone, but they are pretty predictable: after exercising, we go for a walk to the mailbox, and then we make lunch.  We no longer have to eat at noon because the world no longer falls into chaos if we eat at one, or one-thirty.  We have relaxed our requirements, and now J decides when he wants his bath.  In fact, I can now take a bath without him going all Droopy Dog on me.  I just tell him “hey, I’m going to take a shower, and I’ll be back in ten minutes.”  That’s fine with him.

We are adjusting.  We are negotiating.  We are finding our footing, we are sleeping in a little, and we are doing fine.

 

 

I wouldn’t say “like clockwork…”

Once in a while (actually, once a week,) J gets anxious and has a “moment.”  It doesn’t last very long, but it is exhausting.  The PECS board is involved, and there is a rather dramatic insistence on scheduling things until he is satisfied that I (we) have paid attention to what he wants when he wants it.

J times this perfectly.  The moment that I am busy, rushing about, hands full of things, attention focused on something that requires me 100%, THAT is when J will want to go over the board in minute detail.

There is a lot of deep breathing involved.  There is a lot of me reminding myself that this, too, shall pass.  There is a lot of holding a PECS card up to my face, tapping it repeatedly and quickly with one finger, and expecting me to stay calm.  I do my best.  I don’t deny that there are times when I bark and say “yes, yes” because I have either something on the stove, or am slicing something, or am trying to get to the bathroom.

If J doesn’t get the EXACT quality of attention that he requires (because he has his standards and they are on a sliding scale that is unavailable for perusal from the rest of us,) he gets angry.  That’s when the chin-flicking comes in.  Once in a while there is light stomping.  Today we had soft fists hitting the chin on both sides.

My strategy was to say “yes, J…we will go to -insert place here- on -insert whatever day he was pointing at-.”  I said it many times.  J was either unconvinced, or the number of times he had to ask, point, demand attention was higher than on other days.  I said yes, yes, my dear…as you wish.  (Oh, Westley…it didn’t work for you, but eventually Buttercup did figure it out, didn’t she?)  I didn’t really have a problem with this insistence because a) I’m used to it, b) it’s pointless to have a problem with it, and c) I knew it would pass…eventually.

After ten minutes of chin-flicking and chin-hitting I decided to say, rather firmly, “ok, well…I understand that you are pissed off and want things your way, but I don’t think this is productive.”  I went to the balcony, and closed the screen door.  J decided that he should take this opportunity to become even more vocal about what he wanted.  I came back inside and he came up to me, quite close, and repeated the tapping of the PECS card, the chin-flicking, and the chin-hitting.

I don’t tell J he’s being bad.  Even when he’s being a brat, I try to say he’s being rude rather than bad.  Rude is an attitude; bad is character flaw.  So I said “J, you are being rude.  I understand that you want something, but we cannot get on with your breakfast and everything else until you stop this.”  He was shocked that I would take that tack so he got closer, flicked harder and tapped more insistently.

I grabbed the keys, took the security bar with me, and stepped out on the porch.  I grabbed the keys in case J decided to lock the door.  Ditto for the security bar.  I could see him because the door has a window, and I know he could see me.  I locked the door, and stood there looking at the tomato plants on the driveway.

I was more irritated than angry.  I know my son has difficulties communicating how he’s feeling, and I know he can get tremendously anxious, but (as I said to him while he was stomping around the kitchen protesting against life and its hiccups) we are stuck together and all the chin-flicking and PECS-tapping doesn’t help.  “I will help you, but you have to listen when I say whatever it is I’m saying.”  On the way down the hallway towards the door I said “I will come in when you’re ready to listen.”

J’s silhouette filled the window.  He was still standing in the kitchen, his snack portions ready to put in the box, the packages ready to go back to the pantry.  I gazed at the tomatoes and took a deep breath.  I counted to 100.  While I did this, I could hear J walking back and forth between kitchen and garage as he put away the snacks, and then stored the box on top of the fridge.  When I got to 100 I opened the door, replaced the security bar, and hung my keys.  J was standing in the kitchen with his binder, and he was obviously done being upset.

I asked him what he wanted for breakfast, and he showed me the breakfast burritos.  I told him to get the things ready, and stood back in case he needed help.  With very little intervention on my part, he made and ate his breakfast.  He kept looking at me between bites, and I smiled at him in a conciliatory manner.

After that we tidied up the kitchen, made beds, gathered laundry and headed to the basement to do whatever it is we do in the mornings.  Every time I stepped into the TV room, or he came out to the sitting room, he told me he loves me.

At 10:30 we did a few more chores, and then I asked him if he wanted to exercise.  He chose The Sound of Music for his workout movie, and climbed on the elliptical machine.  By the time intermission rolled around, I told him it was lunchtime, and he was happy and ready to eat.  We made lunch, and then he asked for his bath.  After his bath he wanted a shave, and after that he wanted his band-aids and wrist brace.

It is an anxious day.  I know that.  He has been “off,” but he has worked his way through it.  We didn’t start very well, but we figured it out.  Maybe it’s the weather.  Maybe it’s just the excessive togetherness of two adults in the house together all the time.  Maybe he’s just needing the reassurance that he has a say on what he wants to do, and when.

I understand what little I can figure out about all this.  I make sure that I am as fair as I can be, and that -because he was worried about me not being around the day of my surgery- I stay where he can see me if I have to “step outside.”  It is the same dynamic, but it has changed.  I don’t know if that makes sense, but that’s the way it seems.  New and improved?  Same formula and new packaging?  I don’t know how this would be marketed…

All I know is we’re trying to make it work.  It’s not quite running like clockwork, but if you’ve ever looked at a clock’s mechanism (not a digital one, of course) you know it’s quite complex and beautiful.  It takes years to become a master clockmaker.  It takes effort, and attention to detail.  It takes patience and skill.  It takes vision and an understanding of the way pieces work together.

We’re working on it….