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…