J gets older, crankier, and we go back to say AAAH!…

Last Wednesday J turned 23; it was more or less a miserable day, and he wasn’t particularly happy or excited.  The height of his joy was connected to the nieces and nephew calling to sing Happy Birthday in the evening.  The rest of the day was as “meh” as “meh” comes…

Thursday, miraculously, a by-then fully 23 years old J was happy and enthusiastic about EVERYTHING.  He was happy, benevolent, enthused, thrilled, joyous, affectionate, bursting with goodwill and cheer.  This streak lasted until Saturday night and was so wonderful that (fools that we are) we hoped it wouldn’t be over too soon.

It was.

Sunday morning dawned and we had surly J back.

In spades.

The weather, rainy and windy, didn’t really help.  Within an hour of waking up, we were all absolutely miserable and cranky.

Monday brought no improvement.

J, you see, has become a hypochondriac of the highest order.  Every day he wants to go to the doctor.  Every day he is told he’s not sick.  Every day he wants his weight checked.  Every day I weigh him.  Every day he asks about his next psych appointment.  Every day I remind him of when it is scheduled for…

Today we went to the dentist.  We were lucky to find an appointment very soon after his referral.  They checked his film from the other dentist’s office, and they did a panoramic thing of his whole mouth.  J was very good about this.  He gave instructions (gloves, masks, light on, light off, say AH, touch here, look there), and -lo and behold- we are back in the OR on the sixteenth.  Not only that…J got to do his pre-op appointment today.

He was weighed twice (he’s lost some weight…whee), had his BP checked twice, had his heart and lungs listened to most avidly.  The issue with his heart is a right branch thing that means his heart has to switch the current, but we were told it is not a necessarily bad thing for the time being, even though no heart things are good things entirely, are they?  Hearts are fragile things…I’ve read of commotio cordis...I am not a fan.

Just like that, in ten days, we will back in the waiting room of the OR, fretting and worrying, anxiously waiting.  It is never easy to sit through these things.  One has all the worst possible scenarios dancing around, tickling one’s worst fears in the chin and laughing.  The last time we did this J took forever to wake up from the anesthesia, and he wasn’t oxygenating properly for a good while.  We had some stressful moments then, and we had to contend with the bad cut he gave himself on the lower lip that we had to take care of, and that left a little scar.  (And this is why we now have a wound care reference book in our family library…thank you.)

So we are, once more, on the brink of dealing with another significant intervention with J’s dental arrangements.  A molar will come out…a rather sizable cavity that reaches almost to the nerve has developed, and it has to be taken care of…and that might mean that, as time progresses, J will find himself with fewer teeth than he’d like.  He is rather vain, you know, and his smile is something he’s rather fond of.

Some of J’s insistence on “being seen” is justified.  Dada has to stop for an antibiotic prescription on the way home from work.  Is J sick?  No.  Does J not feel well?  No, J doesn’t feel well.  Have I been saying we need to trust his complaints?  Yes.  Have I given in to the notion that he might be seeking attention?  Yes.  Do I feel like shit because I have been telling him there’s nothing wrong with him?  Yes, yes, a thousand times yes………

Does J have a hypochondriac streak in him?  Absolutely.  I say this because I was married to his biological father, and I lived in close contact with his biological father’s side of the family, for years.  Considering that thirty-something years ago my ex-mother-in-law confided in me that she KNEW she had cancer and was dying, and she continues to be one of the healthiest people on the planet to this very day, J does have a streak of the melodramatic and hypochondriac in his genetic makeup.  Panic attacks also abound in that side of the family, mostly among the males.

The crazy he gets from my side.  There’s no denying that.  Not only my mother, siblings…he gets it from me.  I confess this much.  I am far from “normal” and consider myself merely “functional” so I am not saying that all this is on J’s paternal genes.  I can tell you, however, that my “functionality” comes from being reminded -day in and day out- as I was growing up that one has to keep plugging away regardless of circumstances.  “Even without a limb, my dear, that floor isn’t going to clean itself, and babies will need their diapers changed…so you use the other three…and when you’re down to two, you use those…and if you’re down to one…”  You get the picture…we plug away at being alive and living.

J has to have fewer molars.  That is the gist of it.  J needs to be seen and taken care of.  That is the gist of it.  We are doing all we can to help him, and we will worry and feel like crap because we’ve let ourselves be convinced that his hypochondria gets in the way of him telling the truth.  There is some of his mania that is fed by anxiety, and we have to learn to navigate that while recognizing that he knows when something is wrong.  Like I did when he was younger, I have to learn to trust my instinct while still smelling the bullshit he is capable of issuing…

For now, well, I will do my best to get him through this next rough patch…



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…

Stalker and micro-manager all rolled into one neat package…

Anxiety.  You can read the word wistfully if you’re so inclined.  Go ahead…try it.

Doesn’t quite work, does it?  One tries to read it wistfully and it still comes out with a slight “ugh” at the end…  Anxiety…ugh…it’s a word.  Someone needs to call the OED and have it inserted in there.

This morning J had the decency to wait until 4:46 to wake us up.  Actually, that is when he rustled us out of bed.  I had awakened when he started his pilgrimages to the bathroom.  (There’s nothing wrong with his tummy, by the way…he’s just a big bundle of holiday-related? anxiety…ugh.). With chagrin, but also with deep understanding that this is part of the nature of the beast, I was ready for the COFFEE summons.

It came promptly.  And I took a deep breath before I went to check on our son’s needs.

He was fine.  Happy.  Awake.  A bit of a stuffy nose.  Ready to go WATCH TV!  That’s what he said.  He also went downstairs, following me closely, to get his snack box lined up for the day.  As I made coffee, there was my pilot fish…one step behind.  It’s stayed pretty much the same way all morning since.

I’ve been followed to the mailbox (where I put an outgoing letter), the bathroom (where I had to point out that there are things I need to do by myself, and without any instruction on whether they’re being done correctly…), to the closet, to the fish pond, to the closet where we store the ladder, to the garage.  In every instance, except the bathroom where I drew the line and closed the door on him, J has wanted to tell me what I’m doing wrong.  I’d like to point out that he was RIGHT OUTSIDE THE DOOR when I stepped out of the bathroom.  Yes, it’s been that kind of morning…

He has also, oh joy, found a cardboard tube that used to hold gift-wrapping paper, and he has used it as a megaphone.  He’s pretty good at barking orders that way.  Perhaps some rowing crew somewhere could put him to good use.  Would they row effectively while the words COFFEE, BATHROOM, GOOD MORNING, HELLO, CHRISTMAS are being called out through the cardboard tube?  Maybe…maybe not.

Today the plan is simple: keep J busy and engaged, and try to work through some of that nervous energy that seems to have accumulated when I wasn’t looking.  It’s a good day for it, too.  Clean the house for Christmas, put together a couple more crafts, do a little baking…hopefully we’ll both be satisfied by all this hustle and bustle…

and he will sleep until 5 tomorrow…  Asking for 5:30, let’s face it, is asking for the Moon because anxiety…ugh works that way.


And on the Eighth Day of Christmas…

J was up at 4:30 this morning.  Not sort of awake.  Not dreamily awake.  Not lazily awake.  Not lingering-in-bed awake.  Not we-could-hear-him-over-the-baby-monitor-cooing-to-himself awake.


J was up and in our room, alarming the bejeezus out of us with a militant, hearty, enthusiastic, LOUD “COFFEE!!!!!!!!!”

To no avail we tried to get him to go back to bed.

No matter how many times we tried.

He was up.  UP, UP and AWAY!!!!

We tried a timer.

He came into the room five minutes into the timer.  COFFEE!!!!!

We tried telling him to wait until we came to get him.

He was in the room again not two minutes later.  COFFEE!!!!!!!!!!!

We checked his temperature.  It was normal.

We checked his ears.  Waxy, but not more than is acceptable.

We checked his teeth.  Dirty, but no cracks, chips, irritation, swelling, or other reason why he might be up at 4:30 in the morning.

We listened to his tummy.  No more gas in there than there should be.

He was just up.  Up and insistent.

We were up, too.  Up and exhausted.  Up and irritated.  Up and annoyed.  Up and insufficiently caffeinated.

My guess, because he didn’t complain about not getting his PIZZA today (it IS Wednesday, right?), is that J is having not-particularly serious tummy issues.  With this in mind, I amped up the stuff that might help move things along for him in that department.

In the meantime, J is being stubborn.  He won’t tell me if I’m right or wrong.  He won’t explain what is bothering him.  I’m left guessing.  It’s exhausting for both of us.

The sudden outbursts of energy and enthusiasm taking place when I am not in the room confuse me.  Is it me?  Is he sick of me?  Am I annoying him?  Am I the typical roll-your-eyes-at-her mother????

What little energy I have left after being up so early (and sleeping so poorly…have I mentioned I’m a middle-aged woman????) is being expended worrying about whatever is bothering J, and whether I am what’s bothering J.

And it’s the Eighth Day of Christmas…eight maids a-milking and all that other good stuff…if I manage to stay awake for it…


The Second Day of Christmas has arrived…

J’s enthusiasm for Christmas this year is legitimate.  He has been happy, engaged, and fully participant.  Last night, as I was putting the finishing touches on our dinner, he motioned for Dada to get the Twelve Days board ready.  I then sent them to the closet upstairs to each pick a package for last night’s round of gift-giving.  No sooner had they returned to the kitchen that J wanted his shirt changed…apparently the color was wrong for pictures.

Off he went, burnt orange shirt in one hand, and returned wearing an oatmeal-colored one.  He was happy and photo-ready.

The night before we had been standing in front of the PECS board while J went through his schedule for the next day.  Wednesday is PIZZA day, and J was happy about this, but moving quickly towards the card that showed the First Day of Christmas.  We made a chant out of it…EXERCISE, PIZZA, SODA, SWEEP, FIRST DAY OF CHRISTMAS!!!!!!  By bedtime it had evolved into something longer (involving other activities), and always ending with FIRST DAY OF CHRISTMAS!!!!!!

Last night we had to do the same, only switching over to SECOND DAY OF CHRISTMAS!!!!!!!

Methinks this will be a “thing” now.

Yesterday, J’s new neighborhood companion stopped by to keep him entertained while I wrapped Dada’s presents.  Yesterday was, as it were, the true test of if this arrangement is to J’s liking.

It is.

The young man is amenable, kind, and very patient.  We have made a point of explaining that J might not interact in a proactive manner to start with, but will eventually relax into it as time progresses.  The kid (a teenager) is totally fine with it; I can hear him talking to J even when J doesn’t answer back.  It is not forced, stilted, or stressful…he just talks about whatever he has on his mind.  This all bodes well for the recommendation letter I will write for him in a couple of years when he starts applying to colleges: so-and-so exhibits an open-mind when dealing with individuals who are different from himself, and patience in situations that are unfamiliar and potentially stressful for the uninitiated.

When I told J about his new friend stopping by in the afternoon, he was fine with it.  When his new friend walked into the room, J was fine with that, too.  I went off to wrap presents and could hear the gentle monologue being conducted by his young companion.  J was giggling and humming.  Even with Annie playing on the TV, and J’s music playing on the iPad, our Dashing Young Friend kept his cool beautifully.  The letter of recommendation progresses nicely:  DYF can focus on a task while being presented with often-clashing stimuli that would turn the spine of a grown person to jelly.  (On a personal note: I am often tempted to start climbing walls like Spiderman when confronted with this type of overstimulation.)

The interaction was so successful that I asked the DYF if he would allow us to take his picture for J’s PECS board.  With the solemnity of one who understands he has been accepted as part of a tight-knit clan, he stood in the kitchen and posed.  When told it wasn’t intended for a WANTED poster in the P.O. he relaxed and smiled genuinely.

It is that relaxed and kind demeanor that J now has on his Proloquo2Go, its chosen voice announcing DYF’s name, and on his tray of PECS in the kitchen.

All is as it should be, and the Second Day of Christmas progresses nicely…  So does the note-taking for the future college-application recommendations…

A tree! A tree! A Christmas tree!!!!

We have, earlier than usual, acquired the annual Christmas tree.

Actually, Dada was the one who went to get it yesterday while J and I changed sheets, aired out rooms, and worked through a difference of opinions on whether he was ready to eat cheese (after his recent bout with illness), or not…

The tree came as a surprise.  Dada had sent a message letting me know that he’d bought it, and as soon as I heard the garage door open I sent J downstairs to “help Dada”.  The joy in his face was something we had not seen -in a Christmas-related scenario- in quite a while.

J has always been a Christmas person.  He likes the decorations, the ornaments, the lights, the Twelve Days of gift-giving, the music…  He had, however, lost his yen for participating in the tree-decorating routine.  He wanted the tree decorated, but he didn’t want to be in the thick of it as it happened…

Yesterday afternoon he couldn’t wait to get the lights on the tree.  Last night he wanted to rush through dinner to decorate the tree.  We thought he was going to leave the room, and were pleasantly surprised when not only he didn’t leave (thus delegating the tree-trimming to us oldsters) but stayed and started grabbing ornaments and placing them where he thought they’d look best.

This was all done with a smile, giggles, and Christmas music playing in the background.  It wasn’t done in a hurry, and he even stopped to pose for photos, and wore a Santa’s hat while sifting through the boxes.

Of course, my friends, we hadn’t MEANT to decorate the tree last night.  We had brought it into the house so that it would be here ahead of the bad weather they’ve predicted for our usual tree-buying excursion day.  That J became enthusiastic about the whole thing was a happy development.

Later in the evening, as we relaxed after cleaning the kitchen and taking our showers, J emerged from his TV room once more and went downstairs.  Dada followed him to make sure all was well, and found our son with a canister of tinsel in his hand.  On the tree went the tinsel, with more smiles, lights, music to punctuate the process…

Twelve Days is just around the corner, and the recent chaos has prevented me from being fully ready for it, but J is ready.  J is happy to be home, feeling better, and having his Christmas tree in the house…

It feels good……..