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.

Day Six…and the closest we’ve been to a “crisis”

J has a nasty habit of expecting ME to change from street clothes to comfy clothes as soon as we get home from running errands.  This stunt he tried to pull on me today when we got back from the usual Saturday morning rounds of Farmers’ Market, grocery store, etc.

I was wearing a nicer blouse I bought online and didn’t want to get it dirty (we were having Mexican for lunch and, surprise!!!!, I’m sloppy when it comes to Mexican food) so I had every intention of changing.  J, however, was being pushy, and I was NOT going for it…

We had a minor tiff.  He wanted me to change and I was trying to explain to him that I would, but only once I’d opened his bottle of soda with the bottle opener I was retrieving from the drawer.  My son, however, was hell-bent on being melodramatic and decided to hit his head and punch his thigh…

Guess, please, who was NOT going for that???  ME!!!!  I said HEY quite loudly and told to get the ice for his soda and pipe the heck down…NOW!!!!!

J’s eyes opened quite widely and I turned around and went to change my clothes.  He complained to Dada who, quite frankly, was not having any of it either, and promptly got sent to change into his at-home clothes.  Boy, did he whine throughout the whole thing.  I simply went into our room, changed into shorts and a t-shirt, and found my way back to the dining room where I sat waiting for J to return.

Jolly as the Green Giant, my son bounced down the stairs and said THANK YOU.  I said SIT DOWN.  J sat across from me, looking slightly offended and annoyed, but I have learned the difference between what he can and cannot control behavior-wise (thank you, Temple Grandin, for the insight,) and I told him to EAT.  J tried to jump on his quesadilla like a feral cat suddenly faced with a meal that didn’t come from a trash can.  STOP!  Mouth full of tortilla and cheese, J looked at me, stunned.

ONE…(whoa daba daba is what I say in my head instead of one Mississippi)

ONE…

TWO…TWO…(no chance for a whoa daba daba…so I took a deep breath)

TWO!  (whoa…daba…da…ba)  J looked at me with narrowed eyes and allowed me to go as slowly as I wanted to, the feral cat receding into the background, knowing it is liked and Soft Kitty, Warm Kitty, Little Ball of Fur is what is called for…

TWO…

THREE…(whoa…daba…daba…I sped up again)

THREE…

FOUR (whoa daba…daba…and a little more)

FOUR…

FIVE (whoa daba daba)

FIVE…

AND EAT…

And so he ate, counting like the ace that he is, knowing that I was NOT going to give in to pounding or yelling or any other type of emotional terrorism…

When he was done eating, a full ten minutes later, I told J to look at me, and I said (quite calmly) “I will come home and change my clothes, BUT only when I am done doing whatever it is I need to do.  Understand?”  J looked at me, at his plate, and then asked to change the schedule for the rest of the day…

THAT, my friends, is as close as J will come to saying YES, MA’AM.  I’ll take it.  I accept that I have to be concise and precise, and take no crap from him when it’s something that he can control…like his MANNERS!

He asked to do laundry.  He asked to go downstairs to the basement.  He has been sweet and nice since then.  Tonight I will remind him of how he cannot bully me or push me around, but I know that it will take more than ONE or TWO or even TEN reminders.

But if that’s as close as we’re going to get to a tantrum with less medication, I’ll take it.  I’ll take it, and I’ll feel very lucky.  After all, when I think of how very different these disagreements used to be a few years ago, a couple of thunks to the head and some thigh-punching are nothing in comparison…

And on to day seven…

Day Four…not “just a dummy”

Oh, sacrosanct bovine…I was doing fine, I swear, and then we went to the pool.  Now I’m here, all of forty-eight years old, hyperventilating like the little kid I was in the playground when someone insulted me and I couldn’t respond immediately.  My response now, as then, was to simply gather my things and leave…

I pride myself in being a frequent traveler along the high road, but today I wish I was not so dignified.  I wish I could turn around and comment on someone’s parenting right to their face, but -I admit- I am both oozing dignity and a horrible coward.  That and I was taken by surprise.

Let me explain:

This morning we had to make a rush trip to the store because we couldn’t find J’s swim trunks.  On our way back we stopped for lunch so it wasn’t until nearly three that I finally managed to get him into his new flamingo-print board shorts and down to the pool.  He immediately parked himself on the step…that’s what he does.  J sits on the step and there he stays until he’s good and ready to get into the water…say around August.

Today he went in and actually made a more proactive attempt to get farther into the pool than he usually does this early in the season.  Today he reached mid-July depths.  This, mind you, is an excellent sign.  The kid is not just apparently adjusting well to the decrease in his medication, but he’s also enunciating more, trying to spontaneously express what he wants and actually stepping out of his comfort zone and into the pool.  Good stuff, right???

And then the kid with the big mouth showed up and we had to go…

Harmless seeming enough, a dad and his two young children approach the pool.  A heavy Southern accent, but a happy, open smile from the dad and the little girl who walked past us.  Into the water they went, and little whatisname (maybe all of seven or eight years old) immediately starts teasing his sister and commanding attention.  The little girl, maybe five years old?, makes her way past J and tries to engage him in conversation.  He smiles, but -of course- doesn’t respond to her chattiness with anything other than a grin.  The little girl, I can hear from where I’m sitting because J has asked to SIT, is telling him the water is nice and come in and see.  J does nothing other than smile, and I sign from a distance GO WATER PLAY and SAY HELLO.  He just smiles, but he’s not rejecting the little girl’s friendliness, he’s just being…well…autistic.

Up on the terrace, sitting in the shade, another member of this particular party is strumming a guitar quite soothingly.  J smiles at the sound, and I sign to him LISTEN GUITAR.  And he signs GUITAR back to me, and smiles even more broadly.  His eyes lift up to the sky and he closes his eyes, clearly enjoying this little bonus around the pool.

TGG is sunning himself nearby, enjoying his day off and getting ready for class tonight by just plain ol’ chillin’ out.  When he sits up and comes to me, I see the little girl becoming more insistent and, because she comes closer and makes the water splash a bit, J lets out a little AH-AAAH that indicates the water is cold, but not unpleasant.

I tell TGG to sit near J and help him say HELLO to this little girl, and TGG promptly moves over to his side and I can hear him saying SAY HI.  The boy with the long blond hair starts approaching his little sister, and she splashes him playfully and, here it comes, clear as a bell we hear:

DON’T SPLASH HIM.  HE’S JUST A DUMMY!

As I feel my shoulders tense up, I see TGG’s echoing this reaction.  To my left, out of the corner of my eye, I see the dad  still in the water, looking at his kids with a stupid smile on his face.  And wait to see if I hear so much as a low “hey, come here” directed at his son, or perhaps some movement in the boy’s direction.

Nothing.

I hear the boy say the word DUMMY again.  I look at TGG and I can tell he’s looking back at me.  I sign DID THE BOY JUST CALL J DUMMY?  TGG’s face says YES better than any sign could.  I wait a couple more minutes, and then I motion for J to get up and come get his shirt.  Without making eye contact, we calmly gather our things, and leave…

As we walk away from the pool area, I verbally ask TGG if he heard what I heard.  Yes, he says, that kid called J dummy.  That’s when I feel like I’m going to cry, and simply hook my arm around TGG’s and guide J towards the Mail Room because he’s asking for the key.  On the way up the hill, I have to talk TGG into not going back and saying a thing or two to these people…

I don’t know where they live.  I know there are three families that have moved within a few doors of us in recent days, but since I don’t particularly keep looking out the window to locate the new neighbors, I don’t know where they live.  And even if I did, what would I do?  Ring their doorbell and tell them “teach your child acceptance?”  Leave a note on their door that says “he’s not just a dummy?”  Post a note in the Mail Room for the whole neighborhood to see stating that my son is as valuable as their children and…what????

It’s not my job to teach other people how to raise their children.  It’s not my job to teach other people’s children that they are being offensive.  I’ve taught my children how to behave.  I think I did it again today, though perhaps it would have been better (in the eyes of others) if I’d taught them to face up to an unpleasant situation by making it a “teachable moment.”  If the dad heard what his son said, I’m sure he either doesn’t think it was that offensive (kids will be kids, I guess) or he’s mortified and will tell his wife about it when they go home.  Maybe they’ll be embarrassed.  Maybe they’ll think it’s no big deal.  Maybe I’m overreacting.

At the end of the day, all we can do in this household is echo John Mayer’s words: We keep on waiting.  
Waiting on the world to change.