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.






How many horses did you say? Well, yeah…them too.

Things are not good.  Or maybe they are, and I’m just not seeing it.  I’m probably not seeing it.  It seems to be a recurring theme.

I am, at this particular point, more frustrated with myself than I am with anyone else.  And, believe me, I am very frustrated with everyone else.  Imagine then how frustrated I must be with me.

What I am going to tell you now is not intended to elicit sympathy, empathy, antipathy, comments, suggestions, criticism, encouragement.  I am simply going to state facts that might, perhaps, help me figure out why I am so very upset lately.  Even if you know me outside of this little world, please, don’t come forward with anything that you think might pass for a positive response.  I’m just talking to myself and hoping others will listen so they can realize there might be someone in their circle who feels the same way, and that might lead to, I don’t know, something good elsewhere?  Is that stupid?

Look, my mother was mentally ill all my life.  She was mentally ill all my siblings’ lives and during her marriage to my father.  Her mental illness touched many lives; people who worked with her, who were in a car next to her’s while she drove down the freeway; people who were in the grocery store while she shopped, or who made the mistake of attempting small talk at a gathering.  It affected doctors who treated her, her children, her husband, her mother.  My mother’s mental illness traveled quite happily in the genes she passed down to four of us, and we have, somewhat diluted, passed down to our children.  I am sure, however, that she wasn’t the first contributor because, somewhere in the mists of far-gone history, there is another unknown ancestor who started this ball rolling.  Mental illness is a thing with every family, but not every family admits it’s there or accepts it’s never going away.

Every single day of my life I struggle with “feeling sane.”  I have a lot more good days than I do bad ones, but I still struggle.  Our family life, our home, is a minefield of stressful situations.  I am a happy person in general, but I cannot lie and say that it comes easily.

Talk to any of my siblings and they will tell you a story about me.  They have very clear memories of my life.  They all view my narrative as something very definite, and this has fostered resentment over time.

I could tell you a story about me, but it would mean dispelling everyone else’s version.  I am tired of doing that, and I can’t, regardless of how much effort I put into it, change people’s minds when they are so convinced of what they “know” to be true.  Every story has several sides to it, and I am sure my version of who I am and how I got to be here is heavily seasoned with a desire to justify myself.

I am a happier person than I should be is my take on it.  I grew up knowing about myself, my mother, my family, things that children shouldn’t be aware of because it can break them.  I was raised with a marked pathway towards optimism because – I realize now- pessimism is more my thing.  My aunt, bless her sweet resilient soul, mounted an all-out attack on what she must’ve known was my inclination towards depression and gloominess.  If I was a happy baby and a cheery toddler, after a certain age I was brimming with a combativeness and a sadness that I could not possibly explain to you.  To me, outside of the four walls of my blissful little home and the company of my beloved aunts, the world was bleak and unfriendly.

It is, as the British would slangily say, indeed a cock-up that I find myself NOW in my little home and with beloved family members, and I feel combative and sad because there are so many things I want to fix, change, help with, improve, work on and I can’t.  I reach the end of every day thinking “what did I do today?  I did nothing!”

Again, don’t turn around and message me to say how much I accomplish.  This is about me actually voicing the things that I feel, not about getting patted on the head, back or butt for it.  I just get tired of smiling and being cheerful all the time; I’m exhausted by the whole “Little Engine That Could” act because, right this very minute, I CAN’T!

Yes, I know it will improve, and I know we hit slumps.  I know we all face obstacles, and I have to keep the faith.  I know.  I know.  I KNOW.

I am not looking for recognition, but it would be nice, lovely, heartwarming if my son knew who I am.  Don’t say “oh, he KNOWS in his heart.”  No.  No, thank you.  That I am his mother is not something he knows.  What he knows is I’m the person who dispenses medication, cooks meals, bathes him, cleans his butt, brushes his teeth, loses her patience, consoles him, encourages him, loves him, hates him, celebrates his successes, stands in front of his PECS board trying to make sense of what he wants, cannot hear him clearly because her hearing is failing and loses her patience again…

I am The Presence.  I am The Constant.  My name is a mechanically spewed term for calling for assistance.

My mother spent her whole life trying to fill a void she couldn’t clearly define.  She was so worried about that void that she didn’t really bother with anyone else’s.  The one thing we all learned from her was that voids happen.  The problem with my particular void is that it goes largely ignored by those around me, and also by myself.  I notice myself on the hamster wheel; I feel my legs powering that thing, and I cannot understand what makes me do it until I think of the void, and I realize how complex it is.

Once in a while, I pause to think about it, and it immediately sparks my need for constant movement on that hamster wheel.  I am the child of a mother who never really “clicked” with me, and I am the parent of a child who will never “click” with me.  It is the kind of realization that one cannot marinate in, or it will drive you nuts.

So…there you have it.  Another horse.  So many horses.  Wild horses…

Things can only get better, my aunt used to say.  I really hope her voice becomes louder than my worries and my frustration.  I hope I can channel all she ever said to me, and figure out a way to find my way back to not being so upset all the time…

A horse with no name…

I suffer from chronic pain.  It may not look like it…but I do.  If you are a chronic pain sufferer you know it’s par for the course that you learn to keep going.  It’s not that the pain leaves you entirely.  You just learn to run with the degree of pain and exhaustion you’re feeling and become functional.  I am honest when I say I don’t know what it’s like to not have pain, but I do know when it’s too much to ignore and a break is needed.  I also know when it’s something I can set aside as I go about my business.

I have become used to the fact that people don’t believe I’m in pain.  I am accustomed to the “oh, it’s old age” and “but you’re so active!”  Even doctors have been vague in their commentary in spite of all the bloodwork that’s been done.  I’m too old, I’ve been told, to be diagnosed with SLE…it is a “young woman’s illness” a rheumatologist told me after I waited six months for an appointment.  When I countered that I’ve had these symptoms for a very long time she shrugged and said “yeah, but…you’re not a woman of childbearing age anymore…so…I can’t call it lupus.”  She then shrugged again and, with the most condescending look she could muster, she added, “maybe it’s fibromyalgia???”

I rolled my eyes and said, “well, you’re the doctor!”  Suffice it to say I walked out of there without a diagnosis.  The pain, however, didn’t leave me; it just kept its up and down and up and down and flare up and die down thing…  It has continued to do so after nearly two years.

I bring this up because I feel horribly guilty.  When I say horribly guilty I mean it from the very depths of my heart.  I know what it’s like to be dismissed or to be told I’m exaggerating.  And last night, after spending a whole day observing J very closely, I realized that I have been doing the same thing to him.

Holy shit, Batman…J might be suffering from some similar issue with chronic pain that flares up.  He starts out mildly rusty in the mornings; he gets better and more mobile as noon approaches.  He exercises, has lunch, relaxes, takes his bath, has his afternoon snack, and the decline begins.

The slow decline.  The “I just seem to be getting crankier as the evening progresses” decline.  The decline I recognize in myself but had not noticed in him because I’m dumb.  Really, really, really dumb.  And blind.  And stupid.  And…

Feel free to stop me…

Based on my new found illumination I am reading a lot of papers that I’ve found online, and I’m planning a trip to the library to further research what I’ve found.  Yes, there seems to be a link between fibromyalgia and Autism, but I can’t yet quite understand what the gist of the studies is.  There is, to my understanding, a suggestion that if the mother has fibromyalgia signs and symptoms it is quite possible that the child with ASD will have them, too.  I know, I know…I should KNOW about heredity, but I’ve been told so many times that it’s all in my head that I didn’t make the connection…

As soon as the whole dental work issue is resolved, I will make an appointment for him and we’ll discuss with the doctor what we’re seeing that gives us pause: the fractured sleep pattern (even before the introduction of Prozac), the fatigue as the day progresses, the complaints about aches and pains, and feeling sick.  He has also become more sensitive to some stimuli, and his bowel movements have changed (I know…TMI!)

Yes, the guilt…it’s there.  It’s big.  It’s overwhelming.  It makes me feel like I’ve failed J, but I have to make that a propellant rather than ballast.  If I failed to recognize what I was seeing as something that I’d seen before in myself, I cannot sit down to mope about my lack of emotional intelligence.  I am, instead, going to make a good list with observations, notations, comparisons that I can present to the doctor when we go to have this looked at.

All these weeks I have been thinking that J is not sick, and he is not “technically” sick.  That is: J wouldn’t qualify, to the casual observer, as being unwell.  He goes about his business every single day, and he doesn’t have a fever, any significant pain that interferes with his daily activities.  He has discomfort from a mild infection in his gum, and he has a cavity.  That doesn’t mean he’s sick.  He wouldn’t want to go to a doctor for that, especially after going to the dentist and then to his pre-op appointment on Tuesday morning.

J recognizes a visit to the doctor when he sees one, and he knows he was at the doctor in a hospital setting just two days ago.  He keeps saying he’s sick and he wants to see the doctor because he doesn’t feel like himself.  I know that feeling.  I live with that feeling.  I’ve been told, rather dismissively, that that feeling stems from getting older…and I’ve been feeling that feeling since my late teens and early twenties so, yes, technically it came from getting older, but it also stems from something else.  A twenty-year-old wouldn’t, as a matter of course, be showing symptoms that indicate rheumatoid arthritis; that’s not considered being “healthy”, and J -at the age of twenty-three- is constantly uncomfortable and asking to see a doctor.  Either he is a galloping hypochondriac (always a possibility considering that his father and his father’s family are adherents to this practice and have no qualms concocting some ailment to get out of things), or there is something that needs to be addressed.  I intend to discover what the issue is…

In the meantime, I am reading and researching, and atoning.  I won’t atone through indulgence, of course, because that doesn’t really work.  I will atone by listening more and observing better, and by talking to my son.  Because he needs to know, I think, that I know I dropped the ball.  J deserves to have me acknowledge that my impatience and annoyance with him have been unfair.  He doesn’t feel well, and I went along with the attitude that bothers me when it’s directed at myself.  That was, as I said before, tremendously stupid and unfair.

There you have it.  The horse has no name, and it might be that the name I suspect it should be labeled with is incorrect, but there IS a horse…and it makes its presence felt.  I should’ve trusted the maternal instincts that tell me J is incapable of lying (although he IS fully capable of hyperbole), and that he wouldn’t want to be checked by a doctor (an experience he finds invasive and uncomfortable) without some degree of justification.

I feel humbled.  I feel dumb.  I feel, more than anything else, bound and determined to figure this out for J.  It might take sitting through the Katy Perry movie (for the umpteenth time) to make him feel like my atonement is heartfelt and sincere.  I can take another round of Katy…I think.  Maybe I will be so guilt-ridden as to sit through Camp Rock… but I doubt it…

Let’s work on naming that horse, shall we?

…and the horse you rode in on…

Anxiety is a bitch.  Anxiety and Autism together, my oh my, are even worse.  If you throw in a dash of OCD you’re just looking down the barrel of an embarrassment of riches that could blow up in your face at the slightest provocation.

And then there’s menopause…

After any particularly strenuous battle between J and yours truly there comes a moment of exhaustion and embarrassment that culminates in some Sondheim…”aren’t we a pair?”

I don’t think it’s a misrepresentation when I say that we have a love/hate relationship and that it works quite well, thank you.  Of course, I can see people sitting up like meerkats, suddenly alert to the word HATE without giving much thought to what I mean by it…

Let me explain.


The ideal flight plan of parenting involves raising a child from birth to an age when they are fully independent of you.  Along the way, I’ve experienced, there are stops and starts, shifts in the balance of power and influence, changes to the way in which those involved communicate, and a redefinition (almost constant) of what each participant means to the other.  Every parent is the recipient of at least one “I hate you” from their children, and they might not hear it, see it, feel it, but it’s expressed in some way by the fruit of their loins.  A door that slams in response to a query or a dictum, an offering of love misconstrued or rejected, a resentment that isn’t voiced but festers for years until (hopefully) it dissipates.

Every parenting experience has as its objective an empty nest.  Too much space in the house, rooms that suddenly have no particular purpose because the occupants have flown the coop, an excess of dishes and cutlery, leftover toys and games and coats and objects that had a purpose and now just gather dust.  The days are supposed to get longer until we learn to fill them up with who we are as people once we’re done raising other people.

Our nest is populated by three.  Our nest will always be populated by three until we start dying off (oh, please…don’t freak out.  It happens.  People are supposed to die…it will happen to us in turn.  Now, please, breathe and relax a moment…)

We are three and those three have to learn to live with each other, sharing a space, habits, quirks, needs, circumstances.  We have to learn this more frequently than we would have wanted to because things shift often around here.  We were once forty-somethings with young kids; we are now fifty-somethings with a 23-year-old roommate who, we know because we’ve been there in the past, is mortified to be living with his PARENTS!

If you have adult children who are neurotypical you are probably thinking “oh, I miss my kid.”  Of course, you do.  Your kid LEAVES.  Your kid either borrows the keys or takes his/her own car to meet up with friends.  Your kid might go away for the weekend, or come to visit for a few days.  Maybe your kid brings laundry, raids the fridge, hogs the couch, leaves a mess…  Maybe your kid tells you funny/scary/exciting/outrageous stories of something they did with friends or happened on campus.  Maybe your kid hems and haws but still eventually joins you for dinner at a restaurant.

You cherish this. You look forward to it.  You treasure every moment.  You watch him/her leave and you sigh, missing them already.

We don’t really get that chance.  We get to miss TGG, but we also get to be grateful that he is now on his own and learning about life from life itself.  We miss the grandkids, the daughter-in-law, the warm and fuzzy family feeling.

J is always here.  Or, rather, J is always wherever one of us is.  Maybe not directly in our presence, face to face, but he’s occupying this space with one or the other of us, or with both.  We go to dinner, lunch, the movies, shopping, for a walk…J is there.  J takes a bath…aside from a brief moment when I might leave him to get another bar of soap or the shampoo he wants that day (don’t ask…please…it’s a thing…), we are in the same space.  There is the outside world…beyond doors and windows, and we are in here…together.

We go to sleep…J sleeps in the room next door.  We are reading in the living room, and J is watching TV upstairs.  We are in the kitchen putting the finishing touches on dinner, and J is setting the table.

We occasionally steal a moment alone in the house (whether individually or as a couple), but J is nearby.  We have nice romantic dinners at restaurants to observe occasions that are meaningful to us; J is there…like the proverbial chaperone.  He doesn’t interrupt the glances and smiles unless he’s having trouble with something on his plate, or requires some assistance.  But he’s there…

By the same token, J knows we’re always here.  Like any dude his age, he probably thinks “Jesus Christ, people, can’t you just…GO???  Isn’t there something you can do outside the house???  Go sit on that low wall in the backyard with a bottle of wine and a candle…go ahead…I can stay in here and not see you…not breathe with you…ugh…you people are ALWAYS HERE!!!”

The nest is not small, and it can feel roomy and private (or what approximates that) depending on what you want to do, or where you are, but…

We get on each other’s nerves.  It’s inevitable.  We love each other, but we hate each other, too.  As he gets older, J knows there are things he’s missing on, things he could be doing and that could be possible for him if…….  The same happens to us.  We now see ourselves as “damn, I didn’t get to…and I’m never going to…and we’re not going to have a chance to…”

When J is riddled with anxiety for several days in a row, and when his OCD (which he has no control over, and we KNOW this, thank you) takes over and all conflates to make for very rocky terrain, we do get desperate.  We do feel annoyed.  We are tremendously frustrated.

And we curse anxiety.  And we curse OCD.  And we curse Autism.  And the horse they rode in on.  And sometimes we wish that we could change J, and we wonder if he understands how overwhelming it all is for us.  And we realize that it’s, even more so, overwhelming for him.  And that he probably curses his demons, and his fears, and his compulsions.  And the horse they rode in on…

I guess the horses can keep each other company.  Just like we keep each other company…as long as they don’t mate and multiply, we figure, it’s all going to be okay-ish in the long run.


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…