We go for a walk…I paraphrase Michael Corleone…

To start,  please, imagine a long string of expletives muttered under my breath as I stomp back home leading a screeching J, and maneuvering a rather large, heavy, and full wheeled trash can.


OK, so here goes the Michael Corleone paraphrasing: Just when I thought we could go out again, I have to pull him back again.

There we were, two happy pedestrians taking the trash on a for-now sunny day, and out of nowhere came the famous “he’s on a shock collar” German Shepherd.  The loud, sharp squeal and the sudden tensing of muscles (even though the dog was about 100 yards away) made me turn, mutter and paraphrase with enough alacrity to belie my chronic joint pain and difficulty in moving.

The change in direction and acceleration had to be achieved while checking for vehicles (those two STOP signs and one speed limit are doing nothing to help matters with the shitty driving around here,) and guiding J towards our garage while soothing his nerves.

We waited a few minutes.  I took this time to text the landlord and tell him what was going on.  He responded to me with the same concern and interest that he responded to all you lovely readers when you texted him on the same subject.  (HUH?  I didn’t text your landlord, crazy middle-aged mother of J who is on The Spectrum…oh…wait…I SEE!!!!  Ha ha ha…I get it…he didn’t reply because we didn’t text him…get it, get it…go on with your soapbox performance for today.)

J had been happy.  Seriously happy!  He was wearing his new Panama hat, the sun was shining, the breeze was warm and lovely.  Suddenly we were back in the garage and he kept shuffling his feet, looking anxiously at the street where the dog had been.

We ventured out once more.  In J’s hand was our gas bill, crumpled.  He ironed it out hurriedly on top of the trash can lid so I wouldn’t be upset.  I told him that didn’t matter.  We just checked for the stamp, that it hadn’t been torn, and I returned it to him so he could put in the mailbox.

We looked around, saw no dogs, and back we went.  Of course, by this point J is just super vigilant.  Any bark from a distance, garage door opening, sudden step makes him look over his shoulder.  We deposit the trash in the dumpster, look before crossing and head to the mail room.

As we go along I remind J that I have his back.  I will do whatever it takes to help him if he’s anxious.  I will wait, or I will walk faster.  I will take out our dreaded iPhone and (with my too-big fingers and thumbs) shoot off an angry text at the parties in charge of the rules being followed.  I will stand between him and dogs, cars, wild horses…you name it.

I feel his arm and shoulder begin to relax, and we stop at the corner to check for traffic.  “Look left.  No cars.  Look right…” His shoulder and arm tense and he grips me…there is not ONE dog…there are now TWO.  What are these people doing?  Lying in wait?  Did the first guy call and say to his buddy “hey, the freaks are out…bring your German Shepherd out, too?”  I take a deep breath, tell J to walk and not look.

He walks.  He tries not to look.  He fails miserably.  We speed up and make it back to our garage (with J frantically hitting the remote’s button so that it starts to open, closes, starts to open again, and I ask him to take a deep breath and relax because we’re on the concrete of our driveway, and that’s a sanctuary.)

J’s heart is racing.  He looks at me as the garage door closes and we finally find ourselves separated from the world of dogs.  I tell him it’s time for Wii, and he nods.  He takes off his Panama hat, and hangs it in the hallway.  He gets his step stool, and he turns on all the necessary equipment while I change my shoes.

By the time The Monkees are halfway through I’m a Believer, J has relaxed.  He smiles at me, says HAPPY, and then I LOVE YOU.  I smile, say HAPPY and I LOVE YOU, TOO.  I add “I have your back, buddy…I will protect you.”  He lets go of the step stool and, still running, hugs me.  We are actually running while hugging, and this makes us both laugh…

It is, in the great scheme of things, a rather fantastic moment.  J laughs heartily as I lip-sync to Huey Lewis and The NewsDo You Believe in Love? (I’m always The News…doing all the eeehoooohs and such…)

As we make lunch I ponder what people think this is like for him.  I know the property manager told me (with much fanfare) that she used to volunteer with kids who have Autism.  I also know that she, too, has let her dog rove around leash-less.  I know she addresses people not picking up after their dogs, but I also know she never tells them that the lease states dogs have to be on leashes. I know, heaven help me, that I come across as an annoying whiner who thinks her kid’s rights override the rights of the other tenants.  I can hear her saying “the lady in unit such-and-such complained that…”  If the issue had been addressed as “the terms of your lease state that…” this wouldn’t be such an issue; because it is “the lady that lives in unit such-and-such” it becomes sour grapes from a hag who gets disability checks for her son.

I decide to let it go.  Well, not really.  I decide that I have documented it, and I will use this when it’s time to break our lease to move away.  Not in a combative manner, but in a “hey, there’s this that I have expressed concerns about, and hasn’t been addressed” manner.

The moment that was bad is gone.  The moment that sucked is over.

It doesn’t mean it wasn’t bad for J, or that it won’t suck when it happens again.


It’s 1 a.m….do you know where your sleep is?

I remember (vaguely) when sleep came easily and I could embrace it passionately.  In my youth, and I suspect this is true for just about everyone, I could plop down on my bed and (with very little to trouble my mind in those halcyon days of homework being the biggest concern) sleep would rush to me like a lover who had met me in the middle of a meadow covered in flowers…cue the soaring romantic theme music, and together we would tumble into a fade-out.

These days I am frequently, cruelly stood up by sleep.  I am dressed (or undressed) and ready to go, and sleep decides to not show up.  Some nights are better than others, but -mostly- sleep meets everyone else in the house, and teases me from a distance.  Dada, book in hand, is off to dreamland before he has read so much as a whole sentence.  J, bless him, can easily segue into slumber…the whirring of his fan is all that I can hear through his baby monitor.

I breathe deeply.  I relax.  I cleanse my mind of all concerns and worries, all distractions. If I have been reading and I feel like I’m about to conk out, I put my book aside and get ready to surrender.  If I feel like releasing the weight of my body into the covers, the pillows, the warm body next to mine, I do it with gusto.

An hour later I will be sitting in bed, wide awake and anxious.  Either pain wakes me up (pick a body part…this chronic pain crap that no medical professional will give a name to is so random a drinking game wouldn’t work for it,) or I am sitting in bed thinking it’s a heart attack (it never is,) or a stroke (nope, not that either,) and wondering if I should scribble a note to Dada…”I went peacefull….agh!”

Once the anxiety, palpitations, aches, tingling, confusion abate, I settle back in…breathing deeply (never did I use Lamaze for childbirth…now I alternate between that -except for the pushing- and yoga breathing,) I nestle back into my spot…letting go…letting go…letting…

An hour later, bolt upright in bed…

I wonder if I should amend the note: “The previous one was a false alarm…alas, this time…it isn’t.  I didn’t go as peacefully as I wanted…agh!”

I have pondered what wakes me up.  Aside from my body having a ridiculously mean sense of humor, the only thought that crosses my mind is that my mother’s choice of a name couldn’t be more apropos: Dolores (after Our Lady of Sorrows, but also Aches, Pains…)

Why don’t I wake Dada up?  Well, for one: I know I’m not necessarily dying.  As my dad, may he rest in peace, used to say “we ALL are dying.”  Every breath is one less.  If I made a habit of waking Dada up every time I wake up suddenly in the middle of the night, I would soon turn into The Middle-Aged Woman Who Cried “AGH!!!”

This morning I actually didn’t get up for coffee with Dada.  It is a running joke in this household that Dada pulls his best Carl Fredricksen (from Up) sitting alone in the kitchen, looking forlorn and sad, until I emerge from bed to have coffee with him.  I refer to it as “the residue of our Jewish ancestry guilting me to get up because I hate the idea of you missing me, and I can totally picture you old as dirt doing this because I’M DEAD!”  This is part of the grumbling that precedes me as I walk down the stairs every morning.  The grumbling has been preceded by protestations regarding the need to have me present when coffee is consumed.  Why, I snarl as I climb out of bed, must I be awakened by kisses and mussing of the hair while sweetly(and insistently) whispering “your coffee is ready” when it’s not even six-thirty in the morning and I have absolutely nowhere to go…snarl, grunt, growl, grumble, roar, hiss…and then caffeine enters my body and I am glad to be sitting there in the half-light holding hands with my husband.

But this morning, no, I couldn’t.  Last night the sitting-bolt-upright involved thinking “shit…if something happens in the middle of the night, and we call 9-1-1…what happens to J???  Who will sit with him?  Who will soothe him while one of us is being seen to by medical professionals?”  Going back to sleep was not possible.  I kept sitting up with the same torrent of worries streaming through my mind: TGG works an hour away, and cannot leave his patients to come see to his brother; we have no family nearby other than TGG; we are as friendless as friendless can be.

When Dada came to gently jostle me out of bed I said “I just can’t…I can’t…”  At 7:10 I woke up alarmed by the quiet.  We’ve reached the age when we call out MARCO!  waiting for the POLO! to let us know the other person is fine if the house grows too quiet.  I thought he was downstairs, and it was past his time to get ready…so I leapt out of bed, alarmed, and found him getting ready to shave already.

You build this life, see, and suddenly realize that you’ve built it all wrong, I guess.  No.  Wait.  Our life is fine.  Our method is faulty.  Circumstances have sort of forced us, and we haven’t really fought it because we are the way the are.  That makes more sense, and we are accepting blame.

Every day our lives revolve around each other, and around J.  We are not sociable people; we enjoy the introversion that is natural to each of us (although, with each other, we are outright extroverts who can’t seem to shut up or stop laughing around each other,) and we accept the isolation that is built into J’s placement in the Spectrum.  People, for the most part, are awkward about interacting with him, and about understanding us.  There isn’t really a full grasping of what this means, and not everyone is cut out to handle it gracefully.  Not even TGG could after a while.  People don’t fully understand that, even if we wanted to, we can’t interact and socialize in the way that society finds optimal.  If people come here, J will be here.  If we go to people, J will either come with us, or will be left with a caregiver (ours is a little MIA right now…she hasn’t called, and we had given her some space thinking “midterms,” but figured that’s long gone…J hasn’t asked for her either.  We don’t know if they had some sort of disagreement, or if he’s just not feeling the company vibe lately) who might have need of us suddenly.

Dada said, when I told him how I was feeling, that he thinks about that, too, and that his take on it is that, whether we are inclined to or not, we might have to make friends.  I was crying when I said “we can’t move to where we don’t know anyone,” and he said “well, it’s not like we can stay here either…”

Tonight, for my sake and everyone else’s, I’ll take my valerian.  It might help.  Sometimes it does.  That, however, won’t change the fact that, as we ran down a list of people we could call in the middle of the night, we couldn’t find one single person who would a) respond quickly, b) know what to do with J, c) J would want to wake up to find here, or d) we would feel comfortable leaving with J.

J spent the better part of the morning looking at his bleary-eyed mother and asking if I was happy.  I told him I’m happy, but tired…he wasn’t convinced…that kid is too perceptive…




With Thanksgiving done…the free-fall to Christmas begins.

Stop the year!  I want to get off!  Why is it going so fast?  Why is it suddenly the last Monday in November?  Did I blink and miss some of 2016, or am I just now suddenly realizing that time goes faster because we’re older??????

Deep breath.   And another…   and another…

Yes, my friends…it is not yet December, but it’s less than a month to Christmas Day, and the year is basically on its last legs.  What a year it has been!  We have had several rough patches (all of them belonging to different categories,) and we seem to -finally- be witnessing the slow dissipation of the fog that has been J’s mood and attitude lately.  We have had, since Friday, a much happier son than we’d had in a while.  On Saturday night, as he hugged me before bedtime, I whispered to him “how we’ve missed you, kid!”  He smiled broadly, and giggled his way into bed.

More and more we see more of him.  Less and less he seems to spiral out of control when his bandaids are off, or when the brace is removed, or when he is momentarily put out of sorts by something trivial.  We still have to negotiate and remind him of things more often than we used to, but he’s getting closer to being less dependent on our cues and appeasements.  This is, of course, what we need: the opportunity to communicate with him with greater ease.  It is when he is too riled up, too tense, too anxious, too defensive, too self-involved that we have problems communicating, and the med seems to have dissolved some of the thick outer shell he had developed.  Or, maybe, the thick shell was inside, and we’ve just managed to melt it a little.  Only time will tell.

With Christmas just around the corner, we’re working on getting motivated for it…I think the past few weeks have been so emotionally grueling that we might be hesitant about this.  We want, above all else, for J to feel up to it all. We are trying to figure out the best way to not overwhelm him, and so we are going slowly.  I walk with him around the store, and I ask him what things are; he tells me Christmas tree, lights, or he hums Christmas songs.  But we’re not pushing the whole thing to the point where it has to be now, or even soon.  We’re just easing into it.  That he’s been listening to The Waitresses’ Christmas Wrapping on a loop is not necessarily encouraging, but we’re not taking it as a sign that he’s “over” Christmas either.  Maybe he’s just trying to say that he’s not quite “there” yet.

On our Saturday outing we stopped at the crafts’ store, and J helped pick out the garlands and bows we’re using for outdoor decorations this year.  He also helped me find small Christmas-themed boxes for the gifts Dada gives his co-workers each year.  At the store they had a display with small boxes that had winter and Christmas designs, and J didn’t want any with Santa Claus on them; he chose penguins, snowflakes, tartan plaid, wreaths…got very upset when I pointed to Santa Claus.  Santa Claus, however, figures prominently on the wrapping paper he chose for this year’s presents.  So I guess it’s not personal, but the medium didn’t seem appropriate?

Dada is back to work today so we resume our usual routine.  This morning we’ve already made beds, loaded the dishwasher, and are now on a short break before we launch into other chores.  The Waitresses are still singing, but J is in a positive frame of mind.  I don’t want him doing somersaults, and bouncing about in a musical production number sort of way, but I want to see him open to things.  That is the key to making this work…

Well, there are chores to do, and a batch of soaps and bath salts we must produce and package today so they can be labeled and mailed to my cousin.  She put in an order to give to her husband’s staff, and J has been (in spite of his less than stellar mood) working on this project little by little.  He’s done very nice work, I have to say, and he does enjoy seeing the end result once he’s cut ribbons, printed labels, mounted them on pretty scrapbook paper.  He especially likes melting wax and using a J-stamp to seal the wrapping.  It’s all part of a process that makes him feel he’s going from raw materials to a completed product, and it gives him purpose.  He likes that…

Well…November is slowly reeling out to its last day, and we have things to do.  Every day, we hope, will be a little bit better…  Maybe 2016 won’t end on the note we had hoped for when it started, but it won’t clang dissonantly, discordantly, cacophonously as we had briefly feared it would…

It’s still gone too fast, hasn’t it???