The Titanic had a flaw, too…

One month (and a week) into having a puppy, we are making progress…with the puppy.  J is still not particularly keen, but the ah-AH! has dropped in pitch and volume though not in frequency.  This, of course, in spite of the puppy being a lot less rambunctious and spastic than she was in her earlier days here.

We have become a household of baby gates.  This is a bad thing in a sense, but a good thing in another.  A bad thing because we have a lot of baby gates and no baby, and a good thing because the dog is learning boundaries and J is understanding that we accept this is a part of his process.

We are 98% housebroken.  (Part of the remaining 2% is me…I’ve reached that age when the sound of running water makes me dash to the bathroom.  Have I mentioned we have a pond with a waterfall out back, and that I am often in the kitchen or laundry room?  Yes, I’ve spoken to my doctor.  No, it’s not a serious problem, but I’ve been reminded that I really should NOT wait until I ABSOLUTELY have to pee to go to the bathroom.)

J’s lengthy and persistent complaints about his tummy got us a referral to the gastroenterologist.  Long story’s short version: he is not quite at the level of IBD, but might be at the level of IBS.  There is nothing major going on (five tubes of blood pronounce him as healthy as can be except for that pesky inflammation he has been carrying around since December), and he’s taking a very expensive antibiotic to help resolve his current issue.

That doesn’t stop him from complaining.  Today it’s a tooth (that is no longer there), or his shoulder.  Tomorrow it’s his tummy or his forehead.  The day after he will find something not-quite-right with his nose.  What he wants to hear is that he’s OK, and we tell him this frequently, fervently and insistently.  Whether he believes us or not is another matter entirely.

In other news, Risperdal is -again- out of the picture.  He took his last dose on Saturday night (which means he will be feeling the effects of its absence any second now), and we’re just on the Prozac now.  We think it’s been a positive change for him.  Of course, it has brought out parts of his personality that we were mostly unfamiliar with…

I give you: The Big J-Lebowski…

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It’s not that he looks or acts stoned, but J is definitely in more of a chill-out vibe lately.  It isn’t unusual for him to want to stay in his room until mid-morning rather than, as he used to, run out of there in rampage mode in the wee hours.  His jolly, carefree attitude resembles Scarlett in Four Weddings and a Funeral and Poppy in Happy-Go-Lucky…

The only glitch is his insistence that he might be unhealthy, and that could be just his way of commanding attention.  It’s J’s way, we think, of making sure we’re listening and responding to him.

That is not to say that something is shifting in the way that J interacts with us.  He has realized that he is a 23-year-old living with his parents.  He has realized he is no longer a child, even if he knows that he still needs us.

Case in point:

A few nights ago we went to Target to pick up his prescription, and to buy some things we needed.  J wanted to go shopping and he was very excited about the outing.  I went to take care of the pharmacy errand while J and Dada walked around getting other things on our list.  As we were waiting to pay at the register, J said SODA.  I said no, you’ve had yours already.  J insisted.  I said NO.  J flicked his chin with his fingers while saying SODA.  I said NO, and PLEASE STOP.  J flicked his chin some more and said SODA.  I put my hand on his arm to guide him out of the store so he could calm down…and J, all 200-plus pounds of him, stood firm.

I could not move him.

Furthermore, I could feel that he was gently resisting my attempt to move him.

Dada managed, not without effort, to take him to the car, and I finished paying for our purchases while the cashier looked at me with a mild degree of disapproval in her eyes.  I made a point of apologizing for J’s behavior, and she said “that’s ok” in that tone that indicates it’s not OK, but what else is she supposed to say.  I said “he has Autism.  It happens.”  Her face shifted a bit.  I thanked her and walked out.

As soon as I got to the car, I let Dada load up the trunk and I went to J.  The first thing he said was SORRY, and I said “that’s fine, but you cannot do that at the store.  I am upset. You’d already had your soda.”  With that, I climbed in and we drove home.

I spent a long night tossing and turning in the dark.  All this time, I thought, and J knows not to do that.  Why did he do that?  Why did he not just insist, but resist?  Jesus, Mary, and Joseph!  And we’re thinking of taking off the Risperdal for good???

It was probably three in the morning when the dog needed to go outside; I got out of bed and went downstairs.  As the pup ran out and disappeared into the dark for a few minutes I had an epiphany of sorts: J wanted a soda.  J is a 23-year-old man.  A regular, run-of-the-mill 23-year-old wouldn’t even stop to think to ask for a soda.

I’m an idiot.

A couple of hours later, as Dada and I sat discussing the agenda for our psych appointment later that morning, I said “you know, maybe -just maybe- we need to chill out a bit.  J is 23.  What were WE like when we were 23?  I don’t know you, but I got MARRIED at 23…and that was just because I wanted to spite my mother who wouldn’t let me BREATHE without asking her.”  Dada agreed with me.  Later that morning I related the incident to the psychiatrist, gave him my take on it, and he agreed that this was very likely the motivation behind J’s reaction.  I told him that all I want is for J to feel as “normal” as he can within the circumstances, and that -perhaps- what needs to happen is a little more give and take.

The next morning we went out to run an errand, and I asked J if he wanted a soda.  He looked at me as if I’d just offered him a date with Katy Perry.  He said SODA PLEASE, and I pointed him to the fridge where they had displayed 16 oz. bottles.  He grabbed one.  When we got home, he went straight to his snack box, removed his 12 oz. can and put it back in the pantry, replacing it with the bottle he’d just purchased at the store.

I think that’s progress…

for both of us.

Self-inflicted crises and other maladies…

First and foremost: we are well.  A little harried and tired, but fine.  Everyone’s health, thank goodness, is pretty good.  I won’t say it’s awesome…we are, after all, entirely human and aging; this makes us prone to aches, pains, and petty ailments that cannot be considered “illness”, but that still trip us up in our day-to-day life.

J is doing well.  Last week, and this is part of the reason I’ve been meaning to write but haven’t got around to it, they called to tell us they had a cancellation and would we like to take him in for his dental procedure on Thursday.  You don’t spit in the eye of these opportunities; you seize them.  And we did.

Before the dental procedure, of course, came the first minor crisis we had to resolve.

A week and a half ago J’s beloved iPad started freezing and turning off of its own accord. Off we went to get a replacement.  We now have three iPads; two are back-ups (of course) and there’s the new one (with lots and lots of memory) that is for everyday use.  Picking up the iPad required a trip to a mall we’d never been to, and J was fascinated with the place: Disney Store!  Lego Store!  ThinkGeek Store!  Money flying out of mom’s wallet!  But we found a Lego he’d been looking for, and J found some cute t-shirts and pajamas for the kids.

The iPad crisis of 2018 sent us on a dash to solve it.  That it happened BEFORE we found ourselves in the ACC with a faulty iPad that would cause J anxiety we are very grateful for indeed.  The unexpected call about pushing his dental procedure to NOW rather than May put us on our toes…

Of course, this made a week that had one appointment already on the schedule even busier.  On Wednesday it was the psychiatrist, and on Thursday (in the wee hours of a very dark, very rainy morning) we started our trek to the ambulatory care center.  I will say more in a moment, but let me get to self-inflicted crises in my roundabout sort of way.

As you all know, J is deathly scared of dogs.  In spite of this, he has been consistently asking for a dog since sometime in early winter.  We did our trial runs of going to the pet store with no push-back or hysteria from J, and we told him (repeatedly and clearly) that if he wants a dog he can have one.  His insistence didn’t wane if anything it waxed.

We discussed this with J’s psychiatrist, and we threw in (for the sake of being honest) that WE want a dog, and we don’t think that J should unequivocally and unilaterally rule everything about our lives simply because of his Autism, and his fear of dogs.  We believe, we explained, that J can overcome his fear if the dog is trained properly, and the psychiatrist, much to our surprise, agreed and encouraged us to do something for ourselves for once.

One result of the visit was that J is up on the Prozac and down on the Risperdal.  That is: he takes more Prozac now, and he’s down to one-quarter milligram of the Risperdal.  We move closer to the intended goal.

And so Wednesday, immediately after the psychiatrist’s visit, we drove out to the pet shop.  J was absolutely chill about the whole experience.  And, believe me, there were LOTS of dogs there…some loud, some mellow, some hyperactive, some big, some small.  We had seen that they had just received a female Golden Retriever puppy, and we asked to see her.  J didn’t balk, squeal, squeak, jump, cower; he was all smiles.

We returned later in the afternoon.  J didn’t want to interact with the puppy, but he smiled at her and kept asking for her.

Thursday morning we traveled to the ACC, and J was in the OR for four hours.  He behaved beautifully during pre-op and he had a bit of a rough time coming out of the anesthesia.  We explained to new anesthetist that he had trouble waking up and being functional the last time around, and -thanks to modern technology- she accessed his medical records and concluded that he had been over-medicated.  They had given him enough to keep him pliant and then some for a good long time.  She didn’t agree with this course of action and asked if we were ok with the less is more approach.  Considering that J had been in the recovery room for a long time, and seemed groggy for quite a while after we took him home, we told her to proceed in what she thought was best for him.

They had to remove three molars (he is blessed with strong roots and crappy teeth, it seems) so he now has had to learn to eat with the molars on the right side of his mouth.  It’s not his favorite thing, but he has rallied.  He had a bit of nausea and was wobbly for a while, but the anesthetist explained that he would bounce back much more quickly this time around.  She didn’t lie.  Once we headed home and he realized that he could relax when he got here, J was happy and mellow.

He spent a good part of the day relaxing in his bedroom watching Lady and the Tramp, eating vanilla pudding, and not complaining of pain or discomfort.  The only time he had to take Tylenol was on the second day, and that wasn’t related to his teeth; he had a bit of a headache which is normal after anesthesia.  Prudent eating, resting and learning to navigate his new dental arrangement helped J recover and he was his usual self by early Saturday morning.

We took him to breakfast and then we went to the pet store.  And now, my friends, we have a dog.

J is still prudent and mildly guarded around her, but we’ve established sufficient boundaries to satisfy him for the time being.  She has a pen where she hangs out while we eat, a comfortable cage where she sleeps (through the night until about 4 a.m. when she needs to go out), and J is inching closer to her every day.  It will take training (for the dog, J and for us) but we will coexist rather happily in due course.

Of course, that is what I mean by a self-inflicted crisis.  We have, in only a few short days, gone from a household that was neat and organized to a house with dog treats, dog toys, puppy pads, leashes, clickers, bowls and a wagging tail.  We keep strange hours now, and we have baby gates that we didn’t expect to have until the grandchildren came for a visit in April.  J has a baby gate on his TV room doorway with a sign that reads NO DOGS, PLEASE.  There is another baby gate to keep the puppy out of J’s bedroom when she comes upstairs (which she only does at night).

J makes sure there’s always music playing when she’s alone downstairs (because I do have things to do elsewhere in the house), and that she is acknowledged when he walks in or out of the area where she is (between the sitting room and the dine-in kitchen, where the bulk of our time is spent throughout the day).  When it’s time for her to go out, he watches through the window with enough interest to make me feel he will soon want to come out with us.

It’s a process.  A self-inflicted one.  A minor crisis to disrupt our previously somewhat calm life, but we’re all working on this new thing.  We’ve explained to J that the puppy is a baby, and we will teach her how to behave.  I am the boss, I tell him.  I am responsible for her, and I am the one who will teach her (and J) how to occupy the same space peacefully, but it’s not an overnight thing.

I hope I’m right.  I know this dog has a sweet nature (even though she is a puppy and, by definition, rambunctious and disorganized in her thoughts and actions still), and she will make J a good companion.

Those are the latest developments.  I will keep you apprised of our progress with the new addition to the family, and the existing members.  We are up to our ankles in puppy things, and consulting the Dog Whisperer frequently…let’s see how that goes.

 

 

 

 

The old normal is the new normal…again…

Dada started working yesterday.  J was surprised by this development, but he took it in stride…at first he was mildly confused (“what?  We’re not in a perpetual state of vacation????  I wasn’t consulted about this!!!”), then he moved into guarded acceptance (“Ok, go to work, I guess.  We’ll be here…waiting!  We can do stuff together…right?  Am I right, lady who is usually around and has looked less frazzled than I’m accustomed to in the past few months?”), and into being over it by six o’clock last evening (“Where is he?  Why isn’t he here?  He has to go BACK?  Tomorrow?  What madness is this????????”).

Interestingly enough, Dada reports that this is pretty much the way things went for him, too.  He likes what he’s doing (even though he’s new to it).  He wouldn’t mind getting the position (or a similar one in the same place) on a full-time basis.  That being said: going back to work (wearing a tie and slacks) after months of walking around (in jeans covered in paint, t-shirts with holes in them, and socks) at a more leisurely pace, and with the benefit of choosing his activities for the day can’t possibly be easy.

My life, with Dada working or at home, doesn’t change much.  I’m still the one who figures out what goes where, when and how things get done, and I am always with an eye peeled and an ear cocked for the next development.  Laundry always has to get done; meals have to be cooked; someone has to figure out what thingamajig is required to make life more, well, efficient.  That’s me…whether I have Dada at home (which makes it possible to delegate a task here and there), or he is at work (making it possible to not be distracted by one more person who requires my attention).

And so our life goes back to the rhythm that it was accustomed to before we shook it up, tossed it in the air, and grabbed it with a whoop and a holler.  We can hardly believe we’ve been in this house for exactly three months, and that we were in an entirely different city or state before then.  Dada looked surprised when he realized he’d not worked for five months, and then he looked thankful that he could (with extreme economies and limited resources) afford to do that.

The truth is he needed it.  His old job was going to kill him either very slowly (with the gradual onset of high blood pressure), or quickly (a stroke or heart attack).  Our marriage was suffering, and so was our family life.  It hasn’t been a bed of rose petals (the idea of a bed of roses implies thorns, doesn’t it?), but we are all a lot calmer, happier, relaxed, and our focus has shifted to a more positive place.  The focus is on us…we are the thing that matters, and we are giving ourselves our due.

J has learned quite a bit in the past few months.  He has learned, for one, that this is home, and that he doesn’t like the idea of it not being home.  Packing of any sort (even if it’s just for storage) requires clarification: we’re not going anywhere, but we don’t need this right now.  His vocabulary has expanded to include the names of places he wants to go to, and we think this is a reflection of what variety he has available now.  J has, thankfully, broken out of some ruts, and -regrettably- has tried to plant himself firmly in others.  We have made a point of not becoming too attached to his structures, and we’ve discovered that -if we wait to make a suggestion while driving around- J is more amenable to breaking away from what he has firmly set his mind to (as in wanting to go to Farmers’ Market on a day when it was, inexplicably, closed).

Another thing we have noticed is that J’s enunciation has improved massively.  Those K, T, SH, CH sounds are coming out much more clearly.  He will never speak with the crispness of a Shakespearean actor, but he now makes sounds that used to be challenging.  On Sunday evening, for example, he went to his board, rummaged through his tray, and announced -quite clearly- that he wanted to go to Costco.  What used to sound like “cocoa” now sounded precisely like what J meant: he wanted to go to Costco.  This from the kid who used to say he wanted to go to “Sham’s” not that long ago; he is, we’ve noticed, a Costco convert…there wasn’t a Costco in Morgantown, but there is one here, and J has his own card…he is smiling on the photo…broadly.

Of course, the one downside of Dada going back to work is that J’s internal clock is entirely off-kilter.  This morning, it being Wednesday and pizza and Lego, he was up by 5 a.m., and has been trying to make the day go faster since then.  Thank goodness it is also paper-shredding day, and this has kept him occupied from time to time; that I was outside at six a.m. (it was forty-something degrees and I was in my nightgown and robe) feeding the fish in the pond because The Supervisor decided it was time to start micro-managing my task list is entirely beside the point.  Things are, in spite of these small quirks, a lot better now that we’re all more relaxed.

I think, quite honestly, that it’s the windows.  J can look outside from just about any room in the house (his bathroom, the half-bath downstairs and the laundry room being the exceptions), and he can step out on the patio if he is so inclined.  The only glitch there is the frantic bird activity (so many cardinals and chickadees!), and the fact that there is a cat (we don’t think she’s a stray because she has a collar) who spends the livelong day under a bush, and the nights under the grill’s vinyl cover.  We don’t feed her in spite of her friendliness because we are not looking for a cat (since the demise of one of ours, and the disappearance of the other…we assume some animal took her, or someone offered her fresh fish and a lifetime of not brushing her luscious mane), and because it doesn’t look to be hungry.  We are pretty sure she just wants to be friends, gain access to our home, and scratch all the furniture that survived our previous pets.  She is rather insistent, and we refer to her -tongues firmly planted in cheeks- as Elizabeth Warren.

J is not into this whole cat situation.  He’s having none of it.  When he finally saw her, happily running up to Dada as he fed the fish, he screamed as if he’d just seen an angry gollywoggle.  It took all my charm and patience to keep him from locking the cat (and Dada!) out on the patio.

But all is well in spite of these little things.  And we will catch up on our new routine and vary it as needed, and add more places J wants to go and use them for vocabulary (would you believe he knows how to say Cost Plus?  Doesn’t call it World Market…but he tells you he wants to go there…cookies…they have good cookies, and he likes their tableware…)  He is also happy because this is a recycling-friendly town, and people take their own bags to the store.  J will not allow us to leave the house without those reusable bags…

See?  Old normal is new again…familiar but interesting.  Comfortable but exciting…

Ye-ay us!

Another tradition goes bust…

Twelve Days is eight days away.  Wrapping packages has been tricky this year because I no longer have the luxury of time alone to do it.  Yesterday I encouraged Dada (who has been known to wrap things at the last minute) to spend an hour wrapping.  It took him two. Same amount of packages as every other year, but it is an established fact that Dada will never qualify for the World Origami Championship Tournament.

This morning, in a flurry of activity and tape, I wrapped Dada’s presents.  I didn’t want to risk J’s because he was in and out of his room, and if he’d walked in we would have had an international incident.  Because Twelve Days presents are sometimes “combos” it takes me a while longer to put them together than just simply grab one and wrap…plus they all have to be stashed in a certain order, and placed in a way that he will be able to see them when he goes in to organize my closet (an activity he engages in surreptitiously and without malice or intent to spy on presents,) or to hide some item he doesn’t want me to find (the recesses of my closet…he thinks I don’t look there ever.)  J likes to open the door, turn on the light and look at the wrapped presents.  He doesn’t open them.  He doesn’t touch them.  He sees the label on the shelf that indicates where his presents are located (I forget, people, which shelf I’m supposed to be looking in when I’m in a hurry,) and he smiles.  If there is one person I know wouldn’t want to ruin Christmas, it is J…he might pat his Xmas stocking, but he doesn’t peek in it either.

As far as gift-wrapping is concerned, I might have to call our sitter and have her give me an hour to wrap and stash J’s packages because we are usually occupied in other tasks during the day.  I am sure a twenty dollar investment is well worth it if I can get this done, and J can start sitting in front of the closet smiling at his upcoming gifts.

On Friday J and I spruced up our Christmas wreath.  Namely, we put fresh battery-operated lights on it. This is the Franken-wreath.  It is a twig-wreath that we’ve had for about ten years.  On it sits a smaller wreath made of felt hearts stuffed with batting that we made seventeen years ago.  The previous string of lights had petered out after five or six years of being on there.  J had chosen a rather large bow at the crafts store, and we added it to the existing arrangement.  Antoni Gaudí would probably approve…but you never know.  On Saturday we put together the garlands and lights and bows J chose for outside.  I can say without a hint of modesty that ours is possibly the tackiest Christmas display in the neighborhood.  People have gone with fake “natural” garlands, with red lights, with simple strings of lights.  J went all Vegas Showgirl in the 60s.  The only thing missing out there is a healthy layer of frosted blue eyeshadow.  A gold and white garland is wrapped around the railing, a white garland is on the top portion of the railing, and there is a red and green wire garland (holly leaves and such) strung along the white one.  The lights, my friends, are jewel-toned.  Each post has a small wreath made of the same red and green wire garland (he simply didn’t unroll them,) and a big red bow.  The Good Taste Police will soon be coming to knock on our door.  As if this wasn’t enough, J has two more strings of jewel-toned lights that will be strung on the ceiling of our porch…  It is safe to say that there is not even the slightest possibility that we will win “best Christmas display,” but J had fun choosing his bits and pieces.

Yesterday we started putting together the Christmas Tree Forest and Village in his tent.  It is looking quite nice.  Crowded, but nice.  Thomas the Tank Engine and his track still need to go in there, as do the plushes for Rudolph the Red-Nosed Reindeer (Clarice and Rudolph lost their antlers on the very first night they came into our home many, many, many Christmases ago,) and the A Charlie Brown Christmas figurines.  Crowded might be an understatement when we’re done, but J is very happy that we’re doing this.

The one thing we have not wanted this year -to the point of yelling, and then banishing it to the garage and into a plastic crate- is good ol’ reliable Inflatable Santa Snoopy.  We cannot remember exactly what Christmas brought Snoopy into our home, but it had always been a hit with J, and he insisted on having it either in the TV room, or in his bedroom.  Inflatable Santa Snoopy was to J’s Christmas like a banana is to a banana split: take it out and there’s no Christmas…  The soothing rattling of its little inflating mechanism was part of the soundtrack of the season.  It is no more.  He didn’t want it inflated.  He didn’t want it in his room.  He didn’t want it in the house.  He didn’t want it where it could be seen.

Since that staple of Christmas-dom has been rejected (quite vocally,) we are hoping that no objections will be made to buying a Christmas tree.  So far we’ve seen no enthusiasm for them when we go to the grocery store or drive past the Christmas tree lots around town.  Since cold weather is settling in later in the week, we are hoping to get our tree by Thursday.  I have a doctor’s appointment, and Dada will be taking J to find a tree while I’m getting checked out.  I am going to have J help me bring the boxes of ornaments down to the sitting room, and maybe that will be a good indication of how close we are to Tree Time.

Yes, things are definitely changing.  We are starting to understand that J has evolved, matured, regressed, moved on, changed, transmogrified…and we are starting to accept it with more ease, with less of a painful pang.  On Saturday he had a bit of a meltdown when we got back from our shopping, but by evening I’d figured out what it was about: we ran into our former property manager.  J used to see her just about every day.  We’d stop at the office on the way home from the bus; we’d go in to visit with her when we checked the mail, or we’d go for a short walk just to say hi.  She used to visit us.  She was a presence.  And then she found a better job that was healthier and happier for her, and we hadn’t physically seen her since March.  There she was, suddenly, in the movie section at Target, and J was happy to see her, and said hello, and did his whole outing…and then came home and had a massive meltdown.  It didn’t click for me until later in the evening that J must’ve suddenly been reminded of yet another constant that had altered for him this year: his brother, his nephew, his teacher, his classmates, his school, his bus driver and bus aide, and our friend, the property manager.  I felt like a dunce because I had been frustrated with his meltdown, and I should’ve put two and two together.

That’s where we are on Monday.  Santa Snoopy is a no-go, and mother is promising herself to not be as clueless.

Seems like a fairly balanced start to the new week, but it’s early days yet…….

 

Dear Apple…a big…fat…you know what to you…

Oh, Tim Cook…why, oh why…oh, WHY????

Not every update is an improvement, and -quite honestly- these now frequent Software Updates are making me wonder why I switched EVERYTHING to Apple products.  It’s so Microsoft these days!

Our beloved CLOCK…the TIMER that J was so familiar with is now an ominous looking black screen that he cannot make heads or tails of BECAUSE HE CANNOT READ NUMBERS!!!!!!!

Shit.  Fuck.  Dammit.  (Repeat until blue in the face as you try to figure out how to turn it back to the beloved diminishing circle that would comfort him when he was watching the time tick by.  Repeat when you realize that this is irreversible.)

Mother of the Kraken, Apple.  REALLY????  Not only are we spending plenty of money on your products, now we have to endure a change in routine that was completely avoidable and that is disrupting a person’s soothing routine????

His MUSIC has changed.  His iTunes has changed.  Now his CLOCK has changed.  This, stupid people at Apple, is not at all soothing for a person with ASD who finds the ease with which he used to navigate any of the TWO iPads in the house very calming.  Now he sits there and wonders why the numbers look like they are speeding by, and there’s NO DIMINISHING CIRCLE!!!!!!!!!

“Oh, well, you can purchase an app that will…”  Let me stop you right there, stupid people at Apple.  How much more money do you want us to spend?  Do you realize that this individual has a very limited income and that his Social Security Supplemental Income goes down when they consider we are covering his expenses?  Never you mind the logic of THAT…”well, he doesn’t pay his share of the rent…which should be one-third.”  “Yes, but he doesn’t receive enough to pay one-third.  Does that mean we should move to a cheaper abode?”  “You gotta do what you gotta do, but since you’re paying for his shelter and food to the tune of -insert amount here- we have to dock that from his benefits.”  “So we have to buy less food and move to a cheaper place?”

And now his diminishing circle of soothing time measurement is gone.  Gone, baby…GONE!  Just a black screen.  (OMINOUS.  Horrible.  Oh, shit…those numbers move SO FAST and I don’t understand them…self-injurious behavior, self-injurious behavior…)

Yes, Tim Cook…eternal gratitude for this “update.”  Yes, it’s AWESOME for anyone who WANTED IT!  We didn’t have any complaints!  We don’t think the damn thing works better?  What in the world makes Apple think EVERYONE wants to operate thermostat, locks, whatever through their iPad?????  Did you never watch the 70s classic made-for-TV movie This House Possessed with Parker Stevenson and Lisa Eilbacher???????  It was the Fatal Attraction of artificial intelligence operated houses, and I admit I will NEVER want a house that locks itself, thank you.  And, as if THAT movie wasn’t enough, the classic 1984 sci-fi rom-com drama Electric Dreams with Lenny Von Dohlen and Virginia Madsen is yet another cautionary tale.  So…NO…the HOME feature on this Software Update is NOT welcome either.

Thank you, Apple, for this disruption of our son’s routine.  In a year when our household has altered in size, people have come and gone from his social circle, school is out forever, there are no programs for him to participate in, and his mother has had several health issues that have caused him anxiety, your Software Update has been a crowning gem in the pile of his seemingly petty ASD-related issues…

Seriously…A BLACK SCREEN!  That’s right there with the rather large, always flaming fireplace they’ve installed in the lobby of the hospital…very comforting…very, very comforting…

Not all change is good for EVERYONE.

Rant over.

I might have created a monster????

The new board is a no-go.  We gave it the old college try, and it resulted in such tremendous confusion for J that we threw our hands up in the air, called it a good-enough attempt, and returned to what was familiar and comforting to him.

Call us chicken shits.  We’re fine with that.

The truth is that the old board worked just fine, and we were trying to reinvent the wheel.  J doesn’t want to know what he’s doing today…J wants to know what he’s doing………..

So I simply went back to the drawing board on the organization of his PECS, and -seeing the old board set up with MORE options- it was good for him.  One minor, and yet annoying, crisis averted.

In the past week J has learned to lurk around the kitchen as mealtimes approach so that he can jump in and be my sous chef.  This is working just fine.  Of course, he is left-handed and I’m right handed so I have to remember to work across from him so he copies what I’m doing in a way that makes sense to him.  (I tried turning things around and he didn’t like that…we do what we have to do to make it easier for him.)

Like every other kid who is done with school, J would prefer vegging, but it’s just not in his nature.  As much as he wants to be idle, he can’t stand the idea of US being idle, and so he springs into action.  He leaves the comfort and relaxation of his TV lair to make sure that we are doing something worthwhile, and -upon finding us, egads, being idle-ish, he springs into action to make us bolt into action.  This is, my friends, how at 9:07 this morning I find myself with a clean kitchen, a load of laundry in the wash, another in the dryer, and four (count ’em!…FOUR!) clean bathrooms.

Today is not supposed to be Laundry Day, but autisme oblige and here we find ourselves…filling time with a task that is supposed to fill time tomorrow.  I’m not saying this is more difficult than I expected, but there are glitches in our plan.  And surprise, surprise, right?

I made J a cookbook.  It’s a simple book with laminated instructions for making meals he enjoys.  Our maiden voyage was breakfast, and J felt empowered and happy.  He wants to do EVERYTHING in the kitchen…chopping things is the trickiest task because, sadly, I’ve found a pair of chain mail gloves that will guarantee my son doesn’t slice his finger off while slicing mushrooms, but they won’t be here until tomorrow.  Until then we will exercise extreme caution, but it seems that J is so keen on being in the kitchen that he actually doesn’t want to do anything that might get him banished.

J has started to figure out that slicing mushrooms is something he enjoys, especially since the person that slices the mushrooms pretty much controls how many mushrooms are going into each dish.  Sautéing the mushrooms and sprinkling other ingredients into the pan makes him happy…oh, a little pancetta here, a little onion there…is that fresh basil you’re giving me?????  Well…thank YOU!  And so we end up with these fantastic forays into the world of “cooking is fun, please wait until I’m in the room to do it, mother.”  At this point, I cannot boil water without assistance.  Yesterday J spent five minutes looking at two packages of pasta to determine if he wanted spiral-shaped pasta or rigatoni with his turkey bolognese.  I don’t think I have to go into detail about how he has discovered that garlic bread, when made at home, provides the opportunity to do more things in the kitchen.

This morning, my friends, J almost sang with joy when he discovered that we were having breakfast burritos for breakfast.  He scrambled the eggs, sliced the leftover chistorra (if you’ve never had it, excellent Spanish breakfast sausage!!!,) stirred the eggs until it was viable to add the leftover potato-mushroom concoction from Sunday evening’s meal, and then sprinkled cheese on top with the same sort of flourish a magician uses to pull a bunny out of a top hat.  I don’t know if he enjoys eating because he’s learned to enjoy cooking, or if he’s enjoying cooking because he enjoys eating.  Either way, this is now J’s main source of entertainment.

Laundry, bathroom cleaning, arts and crafts, gardening…menial entertainment.  They pass the time.  They fill a space.  Cooking, on the other hand, is fun and exciting.  And those “chain mail” gloves can’t get here soon enough.

So that’s where we are…I am now the mother of Remy from Ratatouille.  If J enjoyed drinking wine while cooking, we’d be in trouble.  It’s bad enough that Dave Brubeck permeates the room as we’re tossing things in a skillet…that emboldens my assistant.  He wants the volume turned UP!  And he announces this with arms up in the air while smiling at the ceiling fan.

Now, if you don’t mind, I have to come up with something we can cook together this weekend.  The weather might allow for outdoor paella cooking, or we might throw down some Argentine empanadas…that will give him a chance to make dough.  Or a quiche for Sunday breakfast.  Or seared scallops…  Mac and cheese just doesn’t cut it anymore.  The board is full of other minor events, but mealtime prep is where we get creative and excited…

Who’d’ve thunk it!?

 

Today is the first day of the rest of your life…

Well, it has finally arrived.

It’s May 18th.

First day of no-school forever.

FOREVER!

How ready are we?  What option do we have but to BE ready?

We have done all we can do, and we will take it from here with a grain of salt.  The BUS and BACKPACK PECS are put away.  The new order of things will slowly take root.

J is ready, I think.  He knows what’s up, and maybe he’ll be in denial for a while, but we’ll figure out how to help him adjust.

It isn’t like we haven’t experienced a lot of change over the past five years.  We were a four-boxing glove family.  We were a Rasta hat and scrum cap family.  We were a Risperdal family.  We were a Slinky family.  We’ve reeled in the bells and whistles and are left with “sleep with them” boxing gloves, “wear to bed” Rasta hat and scrum cap.  No Risperdal.  Slinky…well…Slinky’s a “person” to J, and I’m sure he’d quote Lilo and Stitch if we tried to ditch Slinky.  Slinky is part of J’s ohana

We’ve made progress.  Little by little we have reclaimed some semblance of “control,” and we are pretty firmly set on the parts where our lives function very well.  But change is inevitable.  We cannot control change unless we opt for absolute stagnation.  And stagnation is not something we encourage.  School had to end.  J’s teacher wanted to stretch it out a little, but I knew if we fell into that trap we would just be going against all our preparation for the transition.  All that “it’s until the 17th!” and the countdown would have been for nothing, and J would be confused.  So I said no…let’s stick to the plan.  Change is necessary.

Change, however, seldom comes in singles.  Another relocation is in the cards for us.  Health issues that, thankfully, have been discovered very early in the game are on the calendar.  So transition is the name of the game, and change is the card we drew from the pile…

We’re old pros at this, so we’ll do what has to be done.

J left yesterday morning with his THANK YOUS and his little gifts for aides and teachers.  He had a good day except for a brief portion during which Voldemort (the one person who gives him grief) made his life miserable.  It passed.  It was too important a day to let anxiety linger, and the situation was managed.

At 3 PM I sat on my usual spot, and waited for the bus.  The same lady that usually parks in the middle of the road (blocking the bus driver’s view and thus preventing J from walking independently from bus to mother) parked in her usual spot.  Here I was, one last time, trying to reinforce “you can walk without me,” and there she was doing the absolute opposite for her neuro-typical child.  Here’s the kicker: she drives to the school, makes sure he gets in the bus, and then dashes home to wait for him.  He’s five.  I get the concern, but…this was the one last time to reinforce the “walk towards me…I’m here…you’ve got this!”  That I had to navigate around her car and (several times in the past) cars pulling into the neighborhood’s shared driveway nearly hit me is inconsequential.  But I digress…

Change is in the air.  OK…change is cramping our shoulders, making us frown, giving us pause.  We know as we get older this process of perpetual readjustment and fine-tuning will be more difficult, but we understand that the world we live in is one of constant change.  Gone are the days when people were born, grew up and died in the same town.  We are so far from “home” that it never ceases to amaze us.  Oh, the times we’ve stopped and said “HOW did we get HERE???”  And now it seems we’re on the way to doing it all over again.  The only plus-side we’ve come up with so far is that we no longer have to agonize about school district suitability, but services, etc. are still important.

Last week our main concern was today, and now we’ve added several more things to the list.  But J is happy.  J is taking it all in stride.  J will, like water, fall into whatever container we pour him in, and that’s a good thing.  We will choose a good container; we will, as always, make him a priority.

So here is today…a few hours ago it was just tomorrow. And J is happy with the way this particular morning is going.  Dreary, yes, but a good morning nonetheless.  It is raining and it is gloomy, but we are both in our pajamas (don’t judge) and Dada’s off to work.

Our plan today is simple: he’s already  made his breakfast (with less than 45% guidance and assistance from me,) and then we’re going to do our chores, exercise, and learn the fine balance of not getting into each other’s hair on a more permanent basis.  School breaks, in hindsight, look like piece of cake now…but we’ll learn…we’re going to figure this “we’re all grown-ups sharing a home and with very little to intervene with our day-to-day routine thing.”

The rest will fall into place, right?  Eventually?  With a modicum of stress?

As with birthdays (after a certain age or stage in life) today we don’t feel at all different from yesterday.  That might be a good thing.  Maybe it wasn’t meant to be a monumental shift.  Maybe it’s just like going to the optometrist and finding that one lens makes the images crisper…

Yeah…

I think that’s it…

Let’s go with that…and let’s put the “comfort item” snow boots away…

shall we?