Day Three…and we like it anti-climactic, thank you very much

As transitions go, this one is being smooth.  I would say “too smooth,” but I’ve come to realize there’s no such thing.  I don’t care who’s holding the other shoe, I’m just glad they don’t look like they’re going to drop it any time soon.

Did I just sort of jinx us?  Maybe???

I don’t want to spit in Fate’s (or anyone else’s) eye, but so far, so good.  Nothing that J has done since Monday, when the Risperidone started going from 1 mg a day to .75 mg a day, has been even remotely alarming.  There have been little shifts here and there, but none of them concern me much.  Yesterday’s quieter (when compared to Monday’s) demeanor was what I suspected: he was a little tired from not enough sleep.  When it was time for bed (which has been pushed back all the way to ten-thirty,) J complained but acquiesced.  TGG, cautious and observant to fit the current situation, walked into our room and asked why J was so whiny about going to bed.

Me:  How old is J?

TGG:  18

Me:  In general, what was your reaction when I told you not to stay up late at that age?

TGG:  Pissed off…

Me:  Precisely…

End of story.

I want to tell you my fear has abated.  I’d be lying.  I still worry that, when we least expected, the unnamed source of the unnamed shoe that is yet to drop will not only drop the shoe, but do it with force and defiantly.  I am stressing about this, but quietly.  It’s not fun.  It’s not good for me.  I’m working on not being so wired about it, but I can’t promise that my work will yield any results in the next 24 hours.  Being busy, being engaged in this process is important to me, and -I think- important to J, but I do need to rest and relax soon or I will be useless to him.

The whole point, though, is that I seem to be worrying for naught.  J is fine. J is easily dealing with that .25 mg that he’s not getting each day, and -unless something happens to prove otherwise within the next 108 hours, we’re in a lot better shape than I worried we might be.  I will have run myself down to the nub of my resistance for no good reason.

What am I doing?  I am giving room, and jumping in his path from time to time with tasks that he can complete.  I am teaching him new words, and making sure I slowly sign them so he can learn how to do it himself.  I am talking to him face-to-face, enunciating like Eliza Doolittle in front of the bunsen burner.  I am doing my best to keep him tethered to our calm, balanced existence while chemically egging him on to change.

I am doing my yoga every day.  I am taking deep breaths and not pricking up my ears if I hear a noise from wherever J is sitting.  I am walking, not running.  I am trying to be graceful in my reactions when I really feel like saying “oh, come ON!  If you’re going to blow a gasket, DO IT ALREADY!!!!”  By the time I climb into bed, it takes me a while to fall asleep because I need to go over the day to make sure that I didn’t miss any signs that might be important.

Do you want to hear about my med journal?  The weather is recorded there because I want to make sure I can catch if J is reacting to that or to the med.  The hours of his bath, bedtime and arising from bed are there…because I want to make sure that I’m not imagining how well he’s adjusting to his own new rhythm.  I record his moods, his reactions. I record what he ate and, one thing is certain, he is requesting less carbs and he’s being more accepting of NO when I issue it…

I am going to write myself a note, a reminder that this is not a hurricane one prepares for days ahead.  Coming down from being on red alert all the time is not easy, but I have to have faith that J can handle the little crises without going like Mt. Vesuvius on me…

We’ll see what tonight holds…



Day Two…and still no discernible difference…

Aside from some tiredness that I’m sure is the result of sleeping with his light on Sunday night and being very energetic yesterday, J seems unfazed by the reduction in medication.  Of course, it’s still early to notice a difference.  According to all my research, three days is how long it takes for the med to have an effect, so I’m going to guess that it’ll be three days before we notice if J is slipping back into any of the worrisome behavior that first compelled us to resort to medication.

While J’s descent into the emotional tailspin that altered our lives forever, and the effect the Risperidone has had on his behavior have both been gradual, this morning I was reminded of how sudden the change he experienced from the baby he was to J as an individual with Autism was.

My father recently mailed a box with old photos and other mementos, and yesterday morning it arrived with very little fanfare.  The mail carrier didn’t even ring the doorbell and it was only because I saw the mail truck go by that I told myself “oh, well…perhaps today?”  And there it was…a compact cardboard box, neatly labeled with my dad’s handwriting, waiting by the door.  Since I had about an hour until J came home from summer school, I opened it and found a jumble of old photos, documents, Christmas stockings, the kids’ baby books and so forth.  Among those items there was a stack of old negatives that I didn’t have time to look through until this morning.

Dated November 1st of 1996, a photo shows TGG proudly dressed like Mickey Mouse in The Sorcerer’s Apprentice.  No mouse ears, of course, just TGG (in all his five year-old glory) posing with his home-made costume.  Sitting next to him, looking up adoringly, is J in his stroller.  Yesterday I’d skimmed over the entries in J’s baby book, looking for a clue I might have missed in all my attempts at remembering a timeline.  One obvious fact, J was gregarious and loved his brother to distraction.  This picture shows that; a clearly besotted J looks up at his big brother, all his focus and interest directed at the boy with the blue sorcerer’s hat and the red tunic…

In every picture from that day I saw the same thing: J was THERE, he was engaged, he was in the moment.  I didn’t realize that I was doing it until I paid attention to myself, but I was crying.  I was sobbing as if I had just seen a picture of my long-lost child.  The next morning it was all different.  J as I’d known him until then, wasn’t there anymore.

Two years later a photo was taken where J is wearing the Sorcerer’s Apprentice costume while TGG is dressed as Godzilla.  TGG smiles broadly and enthusiastically at the camera, and J looks down at a piece of candy he is holding in his hands.  The only shred of enthusiasm one sees there is how closely he observes the candy because the rest of him is completely detached from the scene, as if all the other people in the photo were completely inconsequential, as if they existed in another plane.  Year after year, pictures of groups of people where J looks as if he’s not even there, or he’s off in the distance, the background…there, but not a part of anything that is being focused on by the camera.

Grief, redefined.  I didn’t know I could feel this, what with all my “little engine that could” mentality…I don’t think anyone (other than those in the same proverbial boat) can get what this is like.  When I was a young bride, I miscarried at about four months into my first pregnancy; every year since then I’ve quietly observed the date, a banner of guilt flying above my head because my body was not efficient at completing a task it started.  It never occurred to me, until recently, that I wasn’t meant to be that particular child’s mother because I was meant to be J’s.  I had told myself this, you know: “well, if I’d had that baby girl and then TGG, I would’ve stopped at two.”  I had never thought I’d never had J, this person that fills every corner of my existence so well, and so completely.  This morning, when I saw J’s face on that long-ago November, I realized that HE would have been gone, even more gone than when the Autism redefined him.

See that?  J didn’t disappear.  J was redefined.  I was redefined.  Sometime in the middle of that night, something happened somewhere deep inside J’s brain and we all woke up to a new reality and endless, unknown, strange possibilities.  From that moment on, little by little, J kept pulling farther and farther away from everything around him, and now he seems to be coming back…never completely, never fully, but closer than he had been in a long time. The same face that smiled at the camera that day is here, with the same gleam in his eyes, and a lot more hair on his face…

Now, if we could just get that WITHOUT the med…not perfectly, not pristinely, just J as he is without the overwhelming circumstances that seem to weigh him down to the point of desperation.  Let’s see what happens as Day Three approaches…

Working on “the new normal”

This morning I sent J off to summer school with only half his usual morning dose of medication.  The transition begins.  An auspicious sign is that J was overjoyed with the idea of going to school…he let out a loud, happy whoop when he climbed on the bus.  If I can somehow help him maintain focus and enthusiasm at a certain level, the rest of the summer will be smoother sailing than not.  Does that make sense?

As I type this I am listening to Boccherini.  I’ve done my yoga for this morning, and before J left for school he left the kitchen clean, the beds made and a load of laundry in the washer.  No, I’m not having him do my job, but I am making sure he has purpose throughout the day.  His leisure time is dictated by his own rhythm, but interspersed throughout the day are activities that contribute to the general flow of the household.  I’m breaking down “instructional time” into fifteen-minute chunks, and we have one craft activity we will work on each week, in stages, to not overwhelm and to reinforce the concept of process towards result rather than plain ol’ result.

Over the weekend, while J listened to music or watched movies, I worked on learning signs for some flash cards I found at Target.  These are the same sort of flash cards that one uses with very young children to help them expand their vocabulary.  I simply sat down and learned the signs for them, writing a directly-to-the-point description in the back so that Dada can use them too.  While I have plenty of time to practice the signs in front of a mirror, Dada relies on me teaching him and then having his memory refreshed by my notes.  Granted, this is not the optimal way to handle the situation, but it’s all we can do in light of how hectic work is lately.

Yesterday, Dada and TGG drove to Pittsburgh for a ball game.  It was their Father’s Day outing, and they had a fantastic time.  At home, J and I made home-made pasta and J had so much fun that I wish I’d had a camera handy, but one cannot really do both things at the same time.  The weather prevented us from taking a walk, but we got our exercise by dancing to music that J was choosing from his iPad.  After his bath, we worked on vocabulary, and J had a good time.  We walked around the house with the cards, found the items pictured and worked on new signs.  The news that he was going to school starting today filled him with energy when we told him on Saturday morning.  He danced around the kitchen level and repeatedly asked if he was going to school until I put the BUS on the schedule.


On Saturday morning we ran into his aide from school at Farmers’ Market.  J had stayed home with TGG, cleaning bathrooms and hanging out.  He didn’t want to go out just yet so we told him we’d take him out later.  This is the aide who works on Ceramics with him, and who usually works with him during summer school.  She is familiar and well-liked.  This summer, however, she doesn’t need the extra hours so she’s not going to be there.  She asked me if this worried me, and my brain (which can go into hyperdrive quite quickly) managed a swift calculation of pros and cons.  No, I said; we’d love to have you there because we know how much J enjoys working with you, but I think it’s good that you’re taking time off.  Of course, my brain had jerked back and forth between “but he’s going to be taking less med!  This is a disruption!” and “change is good.  It breaks up the too-strict routine and makes him fine-tune his expectations.”  I decided to lean in favor of this being a good thing, and Dada commended me on my level-headed response as we made our way back to the car.

Are you going to tell him, Dada asked.  No, we decided not to tell J, not to feed the “this is going to be different” feeling that might trigger some unnecessary anxiety.  Today, when he gets home and he’s happy with this new experience, I will ask him about who his aide is, and I will work with whatever reaction he gives me.  I am not going to rattle my own cage, and I most certainly will not rattle J’s.  It is enough that I’ve counted the amount of pills we have in this new dosage, written it down on the big kitchen calendar and calculated the window of opportunity for things going downhill, and when to call the doctor to let him know how it’s going.  Mind you, I am also keeping notes on this…and what I refer to as my “cage” is precisely this level of preparation and monitoring that I impose on myself as a way of molding “normalcy.”

J is all about routine.  It calms him.  It soothes him.  It focuses him.  It gives him something to hang on to when things seem rough.  I am all about the iteration of altered routines that become the new normal, and this is a moment in which I (as much as J) have to focus on what’s coming, and manage how to put it in place with as little chaos as possible.  I am only hoping that I don’t royally screw this up, that I don’t make a mess out of this particular “sewing” project like I tend to do when I actually sew.

I am famous for my skill at cutting patterns and fabric, for marking and pinning pieces together and for how neatly I prepare for every sewing project I choose.  Once I take my pieces to the sewing machine, the game changes completely.  I suck at sewing.  I’ve only ever completed ONE garment that didn’t look like Dalí’s interpretation of a sewing project…

I’ve cut the pieces, they’re pinned together…the new normal is about to get put through the machine.  It’s all inside out right now, and I am placing my faith on what comes next.  Let’s see what’s on the other side, shall we?


If the game you’re playing has the sound “quirk” in it, don’t expect it to be played by the rules…

The weather, as usual, has been conspiring to keep us indoors and potentially bored.  We’ve been fighting it tooth and nail.  No sense is being bored when there are so many things one could do…like cheat flagrantly at board games!  But I’ll get to that in a moment…

Project Count Between Bites has been such a success that it took J twenty-five minutes to finish eating a single-serve pepperoni pizza.  He  usually picks out the pepperoni, and then the cheese, and then eats the crust.  Much to my surprise, he was counting to five even after eating a very small chunk of pepperoni.  And he counts after he sips his water, too.  I must’ve made my WHOA, THAT’S SURPRISING!!! face because a fit of the giggles ensued, turning what I thought would be a fifteen-minute meal into a 25-minute meal.  I am not complaining because this is precisely what I was hoping for: mastication, proper swallowing and hydration during a meal.

The rest of the time we’ve been sorting through things that were stored in closets in the basement.  The craft supplies have been organized, and J finished his mosaic coasters earlier this week.  They are intended for use on the patio, but the rain has prevented us from sitting out there so we have them lined up next to the door, waiting for someone to venture outside with a drink in hand.  Tomorrow we will be working with clay, and I’ve already found the old shower liner that I had stuck in the closet when I swapped it out for a new one.  I intended to use it for just these occasions when J has to be inside and entertained…paint, clay, anything sticky and there’s the liner for us.

In the afternoons we’ve been walking to get the mail.  Until I remembered to ask Dada to retrieve the umbrella from the car for me, we’d been waiting for a lull in the rain.  J walks into every single puddle we meet along the way, and thinks it’s pretty funny when his socks get soaked through.  I think he considers it savings towards the next load of laundry.  Oh, well…

Now to board games.  I remember how much my grandmother cheated at cards, and how my siblings used to pretend there was a bird flying around the dining room so I’d get distracted and they could eat my breakfast…so he doesn’t get this from me, but J CHEATS like a bandit when he’s playing board games.  For the sake of full disclosure, we don’t play Qwirkle by the rules, and we sort of go loosey-goosy with the Tetris board game, too.  I am more interested in J learning to take turns, recognize colors and shapes and having fun one-on-one with whomever is playing with him to worry about the strict rules.  Of course, this means that this blithe creature who emerged from my womb will go to town on getting creative while playing.  I make him count the tiles, and we play more like it’s dominoes than anything else, but J…fiend that he is…is rather free-handed with the counting, looks at which tiles he wants and moves my tiles when I’m not looking BECAUSE HE TOLD ME TO CHECK HIS MOVIE!  So there’s intent there…and I find it amusing and irritating all rolled into one…

This morning I started reminding him that summer school starts next week and he looked aghast.  I think (and, yes, I’m patting my back here) that he’s enjoyed my company this time around.  It took a while for him to look at the schedule board without giving me a sideways glance.  I decided to focus his attention elsewhere and asked for his help with the Pixy Stix we use to make the Risperdal more palatable (we’ve been told it’s sour?)  I was ready to negotiate ONE Pixy Stix in exchange for J’s help, but he declined quite politely, cutting the tips of those thin paper tubes and pouring the contents into the old jelly jar we keep in the medicine cabinet.  For the first time, J didn’t gun for a snack, didn’t expect his second favorite candy to be given to him just because.  I think he knows this is his twice a day, and that he no longer has to get desperate if he doesn’t get it…

I haven’t counted the pills for this upcoming reduction in dose.  The doctor didn’t authorize a refill because he wants to know if, at the end of this cycle, we’re still comfortable with the .75 mg a day or if we want to go back to 1 mg or down to .5 mg.  I don’t want to add to MY anxiety by staring at the calendar and seeing non-pareil seed-sized entities dancing around in a mocking manner.  I want to look at the calendar and think of summer (crappy weather and all) unfolding…

Now, if you don’t mind, I have an exciting game of Uno I have to get to ASAP.  J looks like he’s ready for another big laugh at my expense and, heck, it’s numbers, isn’t it…  🙂  At least we don’t gamble with anything other than stickers and M&Ms.  🙂

On the cusp…

A week from today, J will be on his reduced dose of Risperidone.  I still have no deep-seated qualms, but the superficial ones are alive and kicking.  This morning, when J decided he wanted to be rather vocal and expressive about his discontent when I said NO to a snack, I had a brief pang of anxiety, but he acquiesced as soon as he realized that I wasn’t kidding; I meant NO and he knew it.  With what has become J’s typical adolescent shrug of WHATEVS, LADY!, he moved on to the next thing.  End of story.  A non-incident.

On Friday, Dada stopped by the pharmacy to pick up J’s new prescription.  The label reads (rather ominously) TAPER AS DIRECTED.  We shook the plastic bottle before opening it, and the sound was that of less medication.  We peered into the bottle and saw the smallest pills we’ve ever had the privilege to lay eyes on.  Two pairs of eyes looked up, reflecting a bit of alarm and seeking reassurance from the other parental face.

“Those are…very…very…very…TINY…pills,” Dada said.  I simply nodded.  We covered the bottle (if one falls out it’s not likely to be found in the high-pile carpeting we’ve been cursed with here) and looked at the milligrams.  Yup…it’s definitely the right pill: .25 mg.  One in the morning and two in the evening is what we discussed with the doctor.  Three of these non-pareil seed-size pills are supposed to only remove 1/4 of the effect of the other two J will be taking until Sunday night.  “Chemistry is a wondrous thing,” I said to Dada, with a bit of a question mark at the end of the statement.  “Yeah,” he said, “mostly in the same fashion as Dr. Sheldon Cooper argues that gravity is a heartless bitch.”  That made me smile.  And then I wondered if J is supposed to be “gravity.”

Friday, of course, didn’t just revolve around the size of the pills.  No sooner had we begun to spin in the direction of an all-consuming conversation on this topic that we noticed Miss Zelda (the Kraken) had something stuck to her exceedingly luscious tail.  These are part-time outdoor cats, you understand, and as such there is a risk of them bringing things indoor that are not meant to be here.  Case in point, Miss Pipa’s recent attempt to bring a snake into the house, plus the occasional grasshopper, bird, etc.  This time the thing we wouldn’t want indoors was a dog’s feces attached to Miss Zelda’s fur.  An hour after this discovery (and with much gagging, complaining and cursing involved in trying to remove it in a variety of less-invasive manners,) Miss Zelda had to be bathed.

Now, I have known cats who don’t mind a bath.  Miss Zelda isn’t one of them.  Never mind that she suffered the indignity and mortification of being bathed at all, she also had to endure the embarrassment of being outed as a thin, scrawny creature without all that hair to bulk her up.  Imagine Dolly Parton without her ample bosom.  Imagine Cher without the Bob Mackie outfits.  Imagine Tammy Faye Baker without her makeup or hairdo.  Miss Zelda is all hair and very little cat.  Miss Pipa found this very funny and entertaining; the sight of her drenched counterpart being subjected to the blow-dryer with the diffuser attached was what Miss Pipa would consider a hilarious night at the comedy  club.  Miss Zelda, in spite of our best intentions, was completely offended by this intervention and proceeded to act like we’d just tied her to a lazy Susan and then tried to stab her with an ice pick, barely missing every time.

Dry though she was, and warm though we made sure the room was, she proceeded to sneeze, cough and make choking sounds that were proven to be pure melodrama when, watching her from inside the closet, we noticed she was happily preening and prancing her way around our room while emitting these sounds.  No sooner would she hear the door that she would drop on the floor, extended to her full length, and pretend to be on the brink of death.  She wasn’t satisfied until I put a heating pad and a fleece blanket on the bed for her to rest on…this did the trick and the murderous look she had been flashing at me abated, but I still slept with my blanket neatly tucked under me in hopes from shielding my jugular from her claws.

Miss Zelda wasn’t the only creature to get groomed this weekend.  Dada, TGG and J all got haircuts.  J deemed himself BEAUTIFUL after his shower (yes, shower…we’re working on showers rather than tub baths!) and shave.  It’s amazing how proud he is of himself, and how self-assured he is about his handsome face.  He went into TGG’s room to get yet another compliment, but he is happy just telling his reflection in the mirror how handsome he is.  Would that we all shared in that self-confidence!!!

This morning we worked on sorting coloring pencils.  Somehow, over the course of nearly fourteen years of all of us living in the same household, we’ve managed to accumulate a rather large amount of coloring pencils.  (Let’s not discuss the hatbox full of crayons, shall we???)  In anticipation of our move in a couple of months, we’ve started to sort through things so we can do this in as organized a manner as possible.  TGG found all his coloring pencils, I took out mine and we think J has a box in his room.  For the time being, J sorted the ones we’d already brought out of hiding.  Using two mesh cutlery trays, he put greens with greens, blues with blues and so forth.  This is partly an exercise in getting ready to move, and partly a way to help him solidify the idea that blue, green, red, purple, orange, yellow have different shades.  So we’ll be doing this the rest of the week.  Pencils go back in shoe box; pencils get sorted by color family; pencils get put away, and brought back out…

And, yes, we color in between repetitions of the task…

But we have time to fill and occupations to engage in so that the upcoming transition is successful.  Idle hands and brains, you know…



We used to call our old vacuum cleaner J. Edgar.  It was a Hoover and it lived in the closet.  Mean?  Yes.  Maybe that’s why J suddenly turned into the kid who inhaled his food with the same force and relentlessness as a vacuum cleaner.  No sooner was a plate put in front of him that, regardless of how hot the meal was, he’d suck it up without so much as one chew.  Mastication was not his thing, and no amount of wheedling, needling, scolding, persuading, negotiating would change J’s mind.

When I tell you that we all get indigestion witnessing this I am not exaggerating.  J has ruined many a meal for us, and we know he doesn’t mean to, but we also know this cannot continue.

That’s when I started counting between bites.  Oh, he resisted.  J was so angry the first time that he threatened me with a royal tantrum, and I didn’t budge.  In fact, I was so enthused about this new resource that I made everyone put their forks down after each bite, and together we counted to five…SLOWLY…before the next bite.  You can imagine that the rest of the household’s population was not particularly thrilled with the notion of being treated in such a fashion.  J’s meals, generally, are served in smaller portions than ours so that first time (last Sunday) he was done in ten minutes.  He asked to be excused (I suppose he wanted to go fume in the basement) so I sent him on his way.

“MY food is cold,” said one bear.  “Do we REALLY have to do it with him?,” said the other bear.  “Get over it and EAT!,” said I, yet another bear.  True, our meal was less than stellar in temperature, but J ate his meal in more than the usual time, and I actually saw him chew.  Progress.

Between last Friday, when J had his big trip to the OR and handled himself so beautifully, and Monday evening, when I realized that getting him to chew each bite of his meals was not a fluke, I had some sort of weird epiphany: I don’t quite suck as much as I thought as a mother, and I can admit to myself (and by Tuesday I could say “and to others”) that I’ve been partly responsible for some of J’s anxiety.

It was this mindset that I carried to the psychiatrist’s appointment on Tuesday afternoon.  J had repeatedly consumed his meals putting down his fork and counting since Sunday evening, and he was accepting of the fact that if he tried to sneak two forkfuls rather than one, I would count anywhere from 1 to 10 to 1 to 15 to make up for his sleight of hand.  At first he grudgingly accepted this modus operandi, and then he realized that I wasn’t going to budge and we could count as much as I wanted because, after all, I was in charge.  My version of being in charge entails putting my fork down between bites, but it was working and I was willing to eat the coldest, yuckiest-because-of-waiting-to-be-eaten leftovers if that’s what it took to model the behavior for J.

By the time he ate two hot dogs, we were both exhausted, but I felt empowered by this achievement.  Off to the psych’s office we went.

Dada sat across from J and J sat next to me.  The doctor faced all three of us, reading our expressions in that sphinx-like way of his.  We related all the upheaval caused by J’s teeth since the beginning of the year, and we candidly confessed that our anxiety was as great as (if not greater than) J’s.  By that I don’t mean that we were more upset about J’s teeth than J was, but rather that we were the ones anticipating all sorts of disastrous behavior as a result of all this…

We didn’t try to put more of a positive spin on anything.  We were, if anything, truthful and forthright.  We explained how far we think J has come in the past year, and how far we think WE have come.  The doctor, looking from one to the other to the other, asked WHEN we’d like to reduce the med.  Not IF, but WHEN.

So on the morning of the seventeenth of June, before he heads to his first day of ESY, J is taking .25 mg of his med and that evening he will take .50 mg. Granted, it’s a small reduction, but it’s a reduction nonetheless.

After this transition, which we are crossing fingers, toes, eyes and have chickens trying to get to the other side will go smoothly, we go back to see the psych in early August.  We hope we have to wait that long.  We are going to work very hard on working that long.

The way we see it is: we are standing on the edge of a very high bridge, and we’re wearing bungee ropes.  We are at that point where we don’t know if the cords are strong enough, if they will help us bounce or not, if they’re too long and we’ll hit the ground…but we want to jump nonetheless.  We want to jump because we have faith we’ll bounce, but we cannot guarantee it.  Not even J can guarantee that for us, and he’s the most important element in this transition: if he is doing well and he continues to blossom as he has, we will all be fine and this will work.  If, for any reason, we see him falter, then we go back to what we’re doing right now.

What would that look like?  That suddenly realizing in mid-air that we are heading for disaster because J is not entirely ready for this change and the transition is not working for him?  I’m hoping it looks more like Wile E. Coyote suddenly realizing that Acme has let him down (again)


rather than Karl Wallenda slipping from the tightrope and plummeting towards certain death.


(This event, by the way, I witnessed on live television on March 22nd of 1978…the poor man was crossing between two buildings of the same hotel in Puerto Rico and…well…read his wikipedia page…it wasn’t pretty.)

That’s where we’re at…optimistically angling for Wile E. Coyote.  There are worse things one can angle for, right???



Lovely…and amazing

It is Sunday.  That means, my friends, that we made it through Thursday, Friday and Saturday.  Perhaps you’ve been wondering how it all went with J and his Big Dental Appointment.  Perhaps you’d completely put it out of your mind and are only now being reminded of it…either way, you’re getting a recap.

At around 2:oo P.M. on Thursday the hospital called to announce they wanted to talk to J.  I explained J doesn’t talk.  The employee on the other side of the line said she needed to talk to him.  I politely (and patiently) explained that we are J’s guardians and that he doesn’t speak.  She insisted.  This was not going well, was it?  I said to her, again very patiently, that we had submitted the paperwork for J’s guardianship and that I was the responsible party that needed to make arrangements for his appointment.  I guess I wore her out because she simply said “well, bring the medical power of attorney” (to which I interjected “which we don’t need because it is included in the court-appointed guardianship”) and “he needs to be here by eleven a.m.”  Stunned as I was that we had to keep him engaged, entertained, unfed and thirsty for that long, I still wrote down all the instructions she curtly and less-than-nicely gave me.  My heart sank.  J had to go hungry and thirsty until nearly noon on Friday.  Talk about juggling…

I informed Dada of our schedule for Friday and, apprehensively, took J for a long walk so I could explain what the gist of the next day would be.  Did I trigger anxiety in this way?  Yes, I did…J immediately got a little obsessive about things, and clingy as we all know he can be.  If Friday was going to be a long day, Thursday wasn’t feeling much shorter.  The impromptu arrival of the ice cream truck shortly before sunset brought a much needed respite to our stress.  J happily tucked into a cup of ice cream and then followed us around the house until it was time for his bath which, he knows, precedes bedtime.

We kept J awake for as long as we could, giving him his bath at ten P.M. and tucking him in shortly after eleven.  Fingers and toes crossed, we crawled into bed.  Our hopes that he would sleep until at least seven-thirty were dashed when he appeared in our room at 6:15 loudly announcing that it was time for coffee…

GOOD MORNING!  COFFEE!!!  GOOD MORNING!  GOOD MORNING!  COFFEE!!!  GOOD MORNING!  We tried to fake-snore our way out of this bind…it didn’t work.  Having decided to pull a Lech Walesa and not have coffee or water until J was in the OR, we slowly worked our way out of bed, suggested that he fill his snack box (an aspirational snack box, we called it, so that he would know he couldn’t eat any of it until the doctor gave the OK) and out the door we went.

Because we moved as if through Jell-O, it was nearly 8 a.m. when we left the house, decaffeinated, without any of the benefits of J’s med and anxious.  We had determined that even if we had to drive up to Pittsburgh and immediately turn around to distract J from food, drink and impending doom we would.  J, however, had other ideas.  GO FOR A WALK!  We looked at each other…that means the river.  Down to the river we drove, feeding coins into the parking meter and trying to make it seem like we really needed thirty minutes worth of parking (this usually takes fifteen minutes.)  J walked down both piers and back, and then accepted an invitation to walk further down the path (to a place he usually refuses to visit) where there are exercise machines set up.  All that cooperation was heart-warming, yes, but also a little creepy…when J is willing to help, it usually means something else will have to give.

By the time J was done using the bench press, the air walker, and assorted other pieces of equipment, we discovered we’d eaten up 52 minutes and owed money to the angrily-blinking parking meter.  The dreaded request for food was issued as soon as we climbed into the car.  A quick glance was exchanged and Part 2 of the plan was put into effect: we’re going to the store!!!!  Never have we walked so slowly through Target.  Another 45 minutes were burned this way, and J was happy because he found a little speaker he can attach to his iPad so he can make himself heard with the Proloquo.

And then we got to the hospital.  Resistance, of which we got what I’d define as a rather loud token amount, was futile.  In for a penny, in for all 200-plus pounds.  J allowed the registration clerk to tag him (and us) with minimal fuss before we headed to the same-day surgery ward on the second floor. We looked for his number on the board (our claim ticket???) and saw he would soon be called to pre-op.  We didn’t even get to sit down because they must’ve been instructed to simply dive into the proceedings and not make a fuss.

Wailing just enough for his resistance to be a matter of record, J was led to a small prep area where he had to put on a gown (which he didn’t enjoy AT ALL, and demanded that his hats be left on him…we acquiesced) and the long wait for the actual rumble began.  Equipped with his Proloquo, J managed to be quite a cooperative patient.  We were, to say the least, impressed beyond words.  J announced every piece of medical equipment that was being used on him: BLOOD PRESSURE CUFF, STETHOSCOPE…  J echoed every single thing that was done to him: CHECK YOUR PULSE, CHECK YOUR BLOOD PRESSURE.  He told people who they were: NURSE, DOCTOR.  He told us he was HAPPY (we KNEW he was being hyperbolic) and that he was FINISHED.  We explained that no, he was not finished, but that soon they’d be cleaning his teeth and then we’d go home.  He tried to negotiate his way out of the pre-op area: I WANT TO DO THE DISHES; I WANT TO USE THE VACUUM CLEANER; I WANT TO TAKE OUT THE TRASH; I AM TAKING THE RECYCLING TO THE GARAGE; I WANT TO GO TO THE STORE.  He informed every nurse who walked in that he wanted NOODLES AND CHEESE, PLEASE; that he NEEDED TO BUY MORE CHEESE; that he wanted A COKE, PLEASE.  They all were charmed by his ability to express his desire to leave without destroying hospital property or harming humans.  They all wanted to hire him to help at home with chores.  He was voted all-around best patient EVER by all the nurses.

When the time came to put in his I V, J announced what was being done with his Proloquo, and the nurses were impressed that this was not accompanied with resistance or wailing of any sort.  I have to confess that we were impressed, relieved and in sore need of coffee.  It was nearly one P.M. when they rolled him away into the ER with me as his escort; him weaving slightly under the effects of a sedative.  I’ve seen wildlife in nature shows go down more quickly than J did when shot with tranquilizer darts.  The kid was slurring his speech (HEWWO, GOOWH MOWHNIGH, GOOWH EWENIGH,) but he wasn’t going to lay flat until he had no other alternative.  I stopped where it said DO NOT GO PAST THIS POINT, and he waved at me vaguely.

Dada and I had the worst cup of coffee in the history of cups of coffee as we sat staring at the Arrivals and Departures board in the waiting area.  J’s number was highlighted in green, announcing he was in the OR.  TGG texted us several times to see how things were going; we’d seen him in the lobby when he was returning from taking a patient to her car.  When he saw us, he waved enthusiastically, asked how long J’s stint in the OR was meant to last and cringed when we said it could be up to three hours.  He went back to work as we went to the waiting area, and texted us “how’s your La Merde Blend?”  A little levity in the middle of our worry, and very welcome at that.

J’s procedure actually lasted 90 minutes and no major work had to be done.  The dentist (who looked like Captain Picard under his surgical mask)announced J’s teeth are “GOOD!”  Three fillings, he said, and he will have his wisdom teeth removed a couple of years from now.  He could eat normally as soon as he was awake and shaken off the primary effects of the anesthesia.  J woke up slowly, with a bit of a bloody nose, and asking for a cold Coke.  The nurses, who obviously were in awe of him, acquiesced and coddled him more than I did.  He sucked down his Coke with great enthusiasm, announced he was done and asked to go home to eat NOODLES AND CHEESE.

He recovered better than we did.  All the stress of the day, compounded with a much needed bowl of Pad Thai and a tall glass of mineral water with a wedge of lemon, drove Dada and I to relax in bed until I was out like a light and he managed to read for a few hours until it was time to call it a night.  J made up for lost time and worked his way through his snacks.  Aside from a slightly scratchy throat (from the NG tube) and a bit of a bloody nose, he is none the worse for wear.  Yesterday morning he asked to go to Farmers’ Market, and today he is asking for hammer and nails.

The worst part of summer is over.  Furthermore, we have come to realize that, yes, it IS time to start reducing J’s med.  He is ready.  We are ready.  He can now “talk” his way through his worries, give names to things and make them less scary.  Every single penny we spent on that iPad and Proloquo2Go has been worth it.  Every anxious moment, every risk we’ve taken saying NO or working a little off-the-grid to make him (and us) adjust has paid off.

The kid is lovely…AND amazing.