After a long break, and some ups and downs…

It is now June.  We’ve done a lot, and have had a lot done to us, in the past few weeks…

The children visited in early May and J was enchanted by his little niece.  She is a little over a year old, and she is a charmer.  She also happens to think that her Unc is Shrek so that is both cool and almost completely accurate (because J is very handsome and not green).

In late May we had a medical emergency (mine) that involved a rushed trip to the doctor and a quicker conveyance to the actual hospital.  I’ve obviously recovered, but there are things that need to be addressed still.

Dada has a permanent job (and health benefits!!!!) and this is a cause for great rejoicing. He is closer to home (although traffic can still get pretty sticky), and -as was the case on the day of the medical emergency) he can be here with less stress and strain.

J’s med had to be shifted again.  The Risperdal is gone, baby, GONE!  The Prozac has inched-up ever so slightly.  For someone his size, he is still taking very little Prozac, and the effect is positive, but we are still in the tweaking stage.  We’ve had our ups and downs (which seem to be alleviated when we talk to the psych…WHY is it that things sound less daunting when one says them out loud in the psych’s office?), but we seem to be ticking along quite nicely.

J has lost weight.  He’s lost about fifteen of the extra pounds he was carrying on him, and it shows.  I have to go into his closet and take out the oversized pants that now fall off as he walks…  He still enjoys his treadmill time, but he chooses “break days” when he’d rather not do it, and I don’t force him.  The humidity here helps him sweat a lot more so whatever time he spends walking around outside is only a fraction of how much he sweats when he’s on the treadmill in the garage.

In other developments, a few days ago I was miffed with J because he was in “pilot fish” mode and wouldn’t stop following me around…all too closely.  So I told him he had to bathe himself and I’d stay in the hallway.  He was initially hesitant, but now -I’m very happy to report- J is basically taking his bath with me spotting him rather than me bathing him.  This is a huge thing for both of us.  He still needs help shaving, but we’re working on that, too, and clipping his nails, but giving himself a bath is something with which he is comfortable and at which he is adept.

The situation with the dog is slowly improving.  J has yet to fully warm up to her, but he is more trusting of the control we have over her.  The dog is still a puppy (not yet six months old) and is full of energy and enthusiasm that often cloud her ability to be totally cool when she sees J.  That’s the thing: she LOVES J, and she wants to -above everyone else- play with this human being who is the last bastion of resistance to her overwhelmingly cute puppy charm.

Like any living creature who thrives on affection and attention, the pup wants it most from he who doesn’t yet give her any.  Now that she’s bigger she seems sturdier to him, but she still has all those teeth (and that desire to chew-lick on people) and that 0-to-100 MPH tendency that makes J think “oh, no…here she comes!!!!”  In spite of this, and we REALLY are working on it, we are making progress…the dog is learning to sit when J walks into the room, and her efforts to control the desire to steamroll over him with her love are admirable even if the sound of her tail smacking the floor repeatedly at high speed is quite loud…

We tick along nicely…or as nicely as two middle-aged people, a 23-year-old adult with a developmental disability and an enthusiastic and still-awkward puppy can tick.  We are learning each others’ rhythms, and we are figuring out each others’ quirks.  The dog sleeps all night.  J sleeps all night.  Dada sleeps all night.  I know this because I don’t sleep all night.  There’s always one more detail, one more hurdle, one more snag, but we figure it out.  We think that once the puppy is spayed she will chill a bit…or maybe not.  We think once J realizes that he is (as with his nieces and nephews) significantly taller and more imposing than the puppy, he will understand he has more control than she does.  We work on these things…we worry and we work.

The medical emergency (a thing we have long feared and dreaded) taught us something amazing: we have lovely neighbors who actually care about us.  (Yes, we antisocial people have lovely neighbors and the feeling of affection and familiarity is mutual…go figure!). We also learned that J will react coolly in the face of seeing his mother in the hospital on a gurney with IVs and such stuck to her body.  We learned that FaceTime is awesome because it will give J a sense of normalcy while one of us (namely ME) is not there for the very first time EVER at bedtime…

We also learned that we need to be even more prepared for the possibility of catastrophe striking.  The medical emergency was a medical emergency because it was, as emergencies tend to be, unexpected.  We were unprepared and still managed to be graceful about it…nothing like walking into the ER and being asked “are you alone?” only to answer “yes” and see a look of contempt from the intake person until you add “…and no…I am alone right now because my husband is trying to make sure our disabled adult son is ready to deal with coming to be with me.”  From thinking “here’s this woman about to faint and she has no one” to thinking “well, this is more complex than I imagined and I should be a little more helpful emotionally” it was one short, quick step.  By the time, hours later, that J and Dada came to see me, everyone who was taking care of me was a lot more prepared to help my family too.

So that’s it…that’s where we are.  I hope you are all well, and that I haven’t missed too much.  If I have, I apologize.  It’s been Life around here…you know…like in your homes…

Off I go…to tick along nicely…

 

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.

 

 

 

 

Our power to control the weather…

It seems like we have a way of tweaking what is about to happen -weather-wise- in our area.  We move somewhere and the first winter we spend there will experience The Worst Winter Scenario in every model.  This winter we have had record-breaking lows, heavy snowfall, and so on and so forth.  We have promised (repeatedly, vehemently, sincerely) that we are NEVER moving again; we won’t move AWAY from here, or WITHIN here…we won’t move…period.  I think the neighbors are circulating a petition to make us swear on our mothers’ graves that this is true.

If you add to this “talent” the ability to tinker with J’s meds when the weather turns nasty, you get a double whammy.  Either tinkering with J’s meds affects the weather, or we sense it’s time to tinker with J’s meds because the weather is about to change.  Not quite the wind-direction effect has on Mary Poppins’s arrival and departure, but a sign of change nonetheless.

Tuesday evening we got all sorts of warnings about the weather.  Wednesday dawned fair and bright, but Dada’s employer – according to the emergency plans in place – told him to stay home.  And so it wasn’t until today at 10 a.m. that Dada left the house to go to work.  Between Tuesday and this morning, the three of us had a lot of togetherness.  A LOT!

J, of course, was having none of it at first, and Dada was instructed to put all his thespian abilities to work on faking the sniffles.  Let’s put it this way: good thing the man has other abilities because acting isn’t his forte.  J was unconvinced and annoyed until it started to snow…profusely.  Of course, the snow went from profuse to abundant rather quickly, and by Thursday morning (another moment of irritation for our son), the blanket of snow was significant.  J accepted his fate and decided to try to enjoy our company as best he could.  He even let us, oh miracle of miracles, watch a movie with him in his TV room.  He even -egads!- enjoyed it…  So we didn’t get to Paddington 2 on Monday (as planned and hoped by J), but we managed to watch the five-dollar DVD of Paddington on Wednesday.   Dada had found the movie when he went to pick up J’s new prescription and he figured (since we had to subject ourselves to a sequel) we might as well watch the first part.

But on to the part of this entry that everyone is wondering about: how goes it with the Prozac?

It goes well, I think.  J complains that he is SICK, but he doesn’t really mean it; we can tell it’s more of a “hey, my stomach is upset” than a “hey, I feel sick.”  After reading all the possible side effects (a hobby of mine that, paired with my overactive imagination, can present a significant problem) an upset stomach seems like the lesser of many evils.

Considering that J is non-verbal and that his ability to communicate is limited to basic  ASL and his Proloquo2Go, how can I be expected to extrapolate whether he is having depressive or suicidal thoughts?  My son is already a walking, living, breathing conundrum as is, and I’m supposed to somehow recognize that he is about to cause severe harm to himself under the influence of this medication?  As you can imagine, my muscles have been in knots for days now.

We often chase shadows, don’t we?  As parents of individuals with a developmental disability, we often look for things that we cannot even recognize.  If the parents of a neuro-typical kid fail at recognizing depression and anxiety, our odds are not good, are they?  I look for signs of a gathering storm, of clouds forming on the horizon, of a veil being drawn in front of J’s eyes.  I listen, my ears as hypersensitive to the cues as his are to every sound, for music that tells me something is changing for the worse.  I sniff the air as if I can somehow sense sadness by the scents it carries.  I observe his choice of clothes, of music, of movies, of snacks.  I listen to the most infinitesimal change in his tone of voice, in his laughter, in the way he shifts on his couch.

Abstract concepts related to feelings, emotions escape J.  He feels everything.  I’ve seen every feeling play across his face, his eyes.  I know my son feels, but I also know that he finds it difficult to process things that require a little more grasp of the abstract.  People die.  J doesn’t understand that; J just sees it as an absence.  The database in his mind retains an image of everyone he’s ever met, but if you tell him someone has died, the image isn’t erased.  Is it ever revisited?  Possibly.  I’ve seen J pensive as he listens to Music we’ve always connected with my father, but 12 years since the last time he saw my father is a long time, and two years since my father died isn’t going to alter J’s mental image of him.  He had not seen my mother in nine years, and her passing away will not change whatever memories he has of her.  The living are another matter entirely; J will see someone after many years, and he will take a moment to connect the current appearance of that person with the one he remembers, and then -we’re pretty sure- he will absorb this and multiply the file in his mind.  J retains the emotions people elicited in his previous experience of them, and he holds on to fears, concerns, antipathies, affections, tenderness.  It is as if, quite simply, he does an age progression on an existing file, and picks up where he left off the previous time.

But how do you read emotional distress of a more complex nature in a person like J?  How do you figure out if sadness means “I don’t want to live?”  How do you determine if a moment of anxiety means “I want this to be over?”  It is hard to react to things we cannot understand fully, and so we spend a great deal of time trying to decipher our son’s silences, giggles, sighs, repetitions, and hand-flapping.

I read lists of side-effects like other people read celebrity gossip.  I ask myself “is this really possible?”  I tell myself “I would be able to recognize this…right?”  I wonder how I could come up with a test that will determine if I am seeing what I think I’m seeing, or if I’m just imagining some horrible scenario.  I question my own judgment when reading my son’s cues.  I read the lists and then I try to figure out what it all means in a world where smoke, mirrors, and alternate ways of communicating are the norm rather than the exception.

So all I can tell you right now is that J seems a little less anxious, a little less repetitive.  I can tell you that J seems to be complaining of a side-effect related upset stomach and that he seeks the reassurance that I recognize his “SICK” and meet it with a legitimate concern and desire to help him.  I can tell you that I sleep with my ears peeled for every sound, and I count the seconds he spends in the bathroom…then I go to make sure that he is OK.  I can tell you that we make every effort to be with him and offer him our company and support throughout the day.  I can tell you that we tell him we love him, and just how much.  I can tell you that we say “it’s ok if you don’t want us around, but know we are here.”

That’s all we can do.  Listen.  Hope.  Pay attention.  Be present.  Hope.  Look out the window at snow and icicles.  Find things to do together.  Know when to step back and give space.

Did I mention hope?

Well, yeah, we hope this works.  And we look at the side-effects list and then at each other and say “not too bad so far, huh?”  And that is the whole truth: not too bad…so far.

We dip our toes into the sea of uncertainty…

It has been an interesting start to 2018.  Not only is J having his usual spikes in anxiety, his mother is having the usual spikes in being a middle-aged woman.  It can get testy around here.  As I have mentioned countless times in the past to anyone who will listen: Autism and Menopause are not the most fun of combinations.

We’ve been, so far this year, to the dentist (not good news, I fear…we need to address a few cavities and, of course, this has to be done through the School of Dentistry because the average dental practice isn’t quite equipped to deal with the likes of J), and to the psychiatrist.

This second visit yielded possibilities, and this morning -with the trepidation that is usually attached to such developments- J had his first 5 mg dose of Prozac.  The word trepidation has been carefully selected; we are anxious about this, and observant, vigilant, concerned.  We don’t know, after reading everything we could possibly lay our hands and eyeballs on, if this will work for J, but the doctor is hopeful that it will.  Since 8 a.m. I have been watching my son like a hawk while trying to not increase his anxiety through my own.

The most J has done so far is sneeze.  He went to bed happy.  He woke up happy.  He had his meds and breakfast happy.  He wasn’t particularly thrilled about my presence in his room, rifling through a box of odds and ends of Legos looking for Lego people.  He observed me patiently, and then he sent me (and my overabundance of Lego males, and not-enough Lego females) out of the room.

We have done the usual: made beds, cleaned kitchen, taken recyclables to the garage, brushed our teeth, gathered laundry, brushed our hair, washed our face.  All this has been done in the way it’s usually done.  J patiently allows me to ask him for help, patiently completes the tasks, patiently gives me a look that says “can I go now???”

I don’t know much about Prozac other than what I’ve been reading that has raised my hackles, given me pause, and prepared me for the worst.  If it is meant to help him with anxiety and depression, it is certainly having the opposite effect on me.  The doctor says that, hopefully, the Prozac will eventually replace the Risperdal completely, and we will see more weight loss (so far I have him at ten pounds lost over the past few months) and a happier J.

We want a happier J; we also want a more functional J, a less anxious J, a J that feels better equipped to let us help him.  The doctor thinks this is the way to go, and we are willing to give it a go, and we are hoping for the best.

I don’t know if it is that we are getting older, but I feel more like a failure than a success these days.  Not in general (though Lord knows that I’ve never really fully realized any potential for productivity I ever had) but definitely in the “how can I help J?” department.  I feel like I fall short day after day, and I wake up wanting to do more and do better.  It doesn’t always pan out.  In J’s world I’m most assuredly Wile E. Coyote with all his ACME accoutrements…on paper they work, and when I go to use them it’s either fizz or a very loud BOOM.    One thing I can say about myself: I don’t give up easily, and I’m pretty used to the sheen of egg on my face.

I do spend a lot of time reminding myself (and Dada) that we are dealing with an adult who, regardless of his limited intellectual capacity to process that he is an adult in just a situation, is living with his middle-aged parents, and that -as we did at that age- he probably feels like there isn’t much he can do to take control of his life.  When I was a freshly-minted twenty-three year-old I married J’s father so I could get away from my parents.  Much as I hate to admit it, J probably views us with the same critical, impatient eye I viewed my parents at the time.  We like to think we are cooler, hipper, more understanding, more open, more accessible parents, but we are parents nonetheless…and J is our son, and he is almost 23 to our mid-fifties.  That, my friends, must chafe massively.

So that’s where we are today, fifteen days from J’s 23rd birthday.  We are embarking on a cruise of indeterminate duration in the good ship Prozac, and hoping to jettison Risperdal in the not-too-distant future.  The map might as well have “here be dragons” written somewhere, but onward and upward with a few sideways and steps back is all we can do at this time.

We will see how it goes.  I will update you.  I go back to my reading, observing…channeling my dear Jane Goodall and crossing my fingers while toiling way in favor of our son…

Egg on face is a possibility I am willing to risk…

Notes about life here…

The love affair with Raleigh continues.  Whether it loves us back, or not, is up for debate.  We continue to be comfortable (although the humidity level does wreak havoc on my aches and pains), and happy in spite of the everyday challenges being new to a place poses.

We still get lost driving around (not as much as we used to), and have figured out that a lot of the places that seemed oh-so-far-away are really down the street and we’ve been putting off going there for no good reason.

A few days ago J and I were at Michael’s (again…), and we ran into a group of developmentally-disabled adults on an outing.  We see these often, but we’ve yet to figure out a good placement for J.  I’m sure this will take time because, with J, these things take time.  Anyway…as we were walking towards the register a young man from the group turned around and said, rather loudly and enthusiastically, “HI!!!!!!”  The rest of the group turned around to look at us (with varying degrees of interest and comfort), and J -much to my surprise- stopped and looked at his interlocutor before responding with a spontaneous, if not as enthusiastic, HELLO.  It gave me hope that we will soon find a group of peers where he will feel comfortable…

We have also made progress with the whole “let’s go outside and feed the fish, shall we?” request.  Initially J was fascinated but scared, and now he’s fascinated, hesitant, and vigilant of any flying creatures (this includes, regrettably, leaves that fall in a spin from the trees in our backyard), but he does go out there and throw food at the fish.  Once he’s done I have to go out and brush the flakes and sticks into the water, and the fish give me weird looks, but we have made tiny strides in this department.

If Dada is grilling, J now likes to sit on his rocking chair in the patio.  This has made us very happy.  He doesn’t want to walk into the landscaped areas yet (and we really don’t mind because he needs heavy boots in this area where copperheads might appear out of nowhere…don’t go on Google to look for this information…you might freak out like we have), but he is happier with our slice of the great outdoors than we had seen him in previous weeks.

J’s TV room is coming along.  His Lego and train track village is up and running, but we’ve only unpacked about sixty-percent of the Legos he brought assembled from WV.  The trick is to try to keep them in one piece, and that is almost like an archaeological dig…we take one out, go back to the assembly manual, and clean it as we go along making repairs.

We painted the garage for J to have a friendlier space for his treadmill and other exercise.  The ceiling is taking a little longer because we are not Michelangelo.  By this I don’t mean it’s a complex paint job, but rather that we don’t have the ability to do this comfortably.  Next summer, with the benefit of less rain and longer days, we will paint the garage floor.  The handyman will come when he’s available to mount the TV on the wall so J doesn’t have to strain to watch his movies while he “walks.”

As we watch the leaves turn and we complete all the little detail work involved in being fully comfortable in our home (the crafts closet is done, thank goodness!), we continue to figure out what works best for us.  Whereas J used to like his TV room door closed in the townhouse, here he keeps it open and we can go in and out to check on him, or work with him, or just hang out with him.  He is not as territorial of that space in this house as he was in WV.  His bedroom is a lot more comfortable.  He likes the walk-in closet and the windows that give him a view of the backyard.  He likes that there is a small separation between the door and his actual sleeping area…

Yesterday we finally went to the library, and J loved it in spite of their not having videos for borrowing.  We thought for sure that would turn him off, but he liked the way the light streamed in through the tall windows.  Everything was on the same level, and you could look out and see the parking lot surrounded by trees.  A lady was giving a painting demonstration, and while J didn’t want to sit down for it, he was observing from a distance and smiling.  We then walked to a wall where some of her works were being displayed and he identified everything she had painted.  He especially liked a painting that depicted some piglets, and another with a chimp.

We have encountered several dogs in the neighborhood, and J has managed to keep his cool.  The presence of leashes is always encouraging to him, and there has only been one instance of someone’s dog running out as we drive by that unnerved him.  We handled it well, though.  He goes for short walks with me, and when we see someone walking a dog, he feels comfortable just crossing the street to avoid them.

In the last piece of news: J has been on .75 mg of Risperdal for a week.  He has been mildly anxious, a little more persistent about certain things, but we think this med reduction will work for now.  Of course, we have to make sure that we continue to engage him frequently and proactively, and that we address any concerns he might have during the course of the day, but we feel confident that this was the right time to drop that .25 mg from his dosage.

So…there you go…

We are holding up just fine.

 

Fighting the rising tide…and failing

We knew the weight would pile back on once the Risperdal returned to the mix, but it is nonetheless frustrating to see it happen.  We feel like semi-failures.  I say semi because we do all we can, and we know it…

Of course, the other part of the semi is that we wish we could do more.  J exercises every day, eats prudently-ish (I cannot say he is a role model for not eating anything he shouldn’t, but there is not a trace of salt-laden Ramen noodle, glow-in-the-dark-powdered-cheese macaroni, and so on…  He gets veggies every day, he has a limited amount of cheese, and still here come the pounds, forming a suit of armor around him.

We can tell he is hungry.  We can tell part of it is the Risperdal.  We know some of it is the appetite of a 22 year-old male body.  In order to control his weight in the way we wish we could drastic measures would be required: a ridiculously low amount of calories, a tremendously hectic pace of exercise.  It is, sadly, unrealistic.  We are hoping that the warmer days ahead will allow us to take him for walks on top of the exercise he does in our garage.

This, of course, will only go so far to help us keep his weight under control.  We are still on the “J’s wearing an XL instead of a L” portion of our frustration…we want to keep our frustration at that level.  Last evening, as we sat in the Urgent Care waiting for J to be seen (more on that later,) we were pondering whether he needs a whole milligram of the Risperdal, or if we’re just comfortable with that dose.

Did we go from .5 to a full mg because we’re chicken?  Or did he really need it then, but no longer needs it now?  Since we’re seeing the psych on Friday, I will pose this question. Before then we will do much inner monologuing, much discourse…  There is a certain degree of desperation that sets in when your child (regardless of whether he’s built like a  linebacker, or not) is hurting himself.  You want it to stop.  You might make choices at that moment than you wouldn’t in other circumstances.

Why are we thinking this now?  Is it just the weight?  No, not really.

Yesterday J wasn’t feeling well.  He wasn’t feeling well, and he was going out of his way to prove he was fine.  It was his left ear, see…and he is VERY TOUCHY about his ears.  Many years ago he had to go to the ENT to have a piece of earplug removed from each ear.  That didn’t go well.  At the school (never mind who the teacher was, or why he made such a stupid decision…regardless of whether he won Teacher of the Year for the state,) they had broken an earplug in half, and pushed it into J’s ear.  They were wedged in there pretty solidly, and the removal process was not painless, and it certainly did not lack in drama or trauma.

So our son was being stoic, and I knew something was wrong.  We had a wee bit of an argument.  I discovered how strong he really is, and NO, he didn’t hurt me, hit me, push me…he simply stretched his arm out to block my way (I was trying to Proloquo my way into a doctor’s visit) and I COULD NOT MOVE HIM…  There was no violence, no aggression, no anger…just sheer determination a la Gandalf that none shall pass…and none did.

Of course, J realized that he had done something wrong, and he then hugged me (thus proving his strength once more,) and said he was SORRY.

Anyway, long story short: I saw blood when I gently rinsed his ear with hydrogen peroxide.  A quick glance with the otoscope told me that, yes, there was something wrong in there…  He has an ear infection and, once he realized that it wasn’t going to go away just because he wanted it to, J accepted a visit to the doctor.  We did have a bit of an argument.  It was more along the lines of “I want to help” SCREECH “listen to me” SCREECH LOUDER “will you listen to me??” SCREECH AND HOWL “come on, dude…sit here, and look at me” HOWL SCREECH BYEEEEEE until we ended up huffing and puffing in opposite directions to calm down.  There wasn’t, however, any SIB…and the anxiety that TGG (code name Kylo Ren…seems apropos, no?) causes him is being managed positively.

When we both came down from the argh moment we were having, and it was not easy because one party was dealing with worry and urgency while the other was sorting through anxiety and stubbornness, I explained that I wanted to help, and asked if he trusted me.  We called Dada and off we went.  A promise of a trip to the grocery store didn’t hurt, let me tell you…

We are home today, and he is happier than he was yesterday.  I know his ear still bothers him (I don’t know WHY this child has so much wax in his ears, or why this particular ear got infected,) but he knows the antibiotic will help.  That is enough for him.  He insisted on doing his elliptical (to the tune of The Sound of Music, a switch from Fiddler on the Roof…maybe because it’s Passover?  He wants to give Tevye a break?,) and he has been in a nice mood all day.  We worked on vocabulary, and we did some chores.  I’m sure we’ll work on a pending project after lunch…

There you have it: the kid is gaining weight because of the med, the parents feel guilty, I’ve learned not to try to move the immovable wall that is my son…

We’ll see about the med reduction.  Yesterday’s medical semi-crisis was a lot more manageable than I would have expected before we went back to the med.  I am sure that, stubbornness and anxiety notwithstanding, J can manage himself better, but it’s a subject for the doctor to ponder with us…