A setback towards progress…

Blood.  Copious amounts of it.  Red, red, freely flowing blood.  Did I mention the copious amounts?  It wouldn’t really stop either.  That’s what usually happens with superficial wounds.  The more superficial the wound, the later it is at night, the more tired you are, and the more freaked out the person with the wound is…the harder to deal with the mess, the treatment, and the situation.

Let me state, quite unequivocally, that J is fine…ish.  That is: J is fine, but he has an injury, albeit a superficial one, on his hand.  That the injury was caused by the band-aidshe wears in spite of not having any wound is…well…I’ll let you savor and roll that one around of a while.

This is what happened:

Our son, he of the ASD persuasion, has been insisting -as has been amply documented- on wearing band-aids as comfort items for a while now.  At one point his band-aid habit was anywhere from 77 to 104 band-aids a day.  That is a lot of bandage adhesive on skin for no good reason, my friends.  That skin becomes more fragile over time for every human being is a fact; that J has forced his skin into being even more fragile than it should be at his age is a sad reality.

Yes, we need to wean him off the bandages.  We know this.  We are, however, picking our battles at this point, and a reduction in the amount of bandages used per day seems a reasonable step at this time.  We are now at, on a really good day, 22 to 26 bandages a day, but on a bad day we can go up to 36 to 39.

Moisturizing is important.  J is partial to Nivea cream.  Cleanliness is important, too.  Proper circulation is key, but we know that the use of the wrist brace (which J wants nice and super-snug…think Bee Gees pants circa 1977) is an issue.  As I said, conditions are improving but we are still on the “when will this go back to no band-aids until bedtime?” stage of our confusion and desperation.

And that is how we come to last night.  And the blood.  And the copious amounts of blood.  If you’ve never heard Joan Sutherland singing the role of Violetta in Verdi’s La Traviata…specifically Sempre libera you cannot visualize the flow of blood.

No sooner had I removed the band-aids that a quarter-size piece of skin came off.  And then I heard Joan Sutherland…cascading, flowing…why I thought of something that joyous when I saw the blood (lots of it) is beyond me.  Maybe because my dad always used to talk about how her voice flowed so flawlessly, unstoppable, soaring…  J, of course, screamed.  I am sure it hurt when the skin came off (and superficial things tend to hurt like crazy,) and I’m sure the blood freaked him out.

I was in the zone.  Prompt, focused, determined.  Dada was my assistant.  Back and forth to the closet where the first-aid stuff is, and holding down gauze and J as I thought of more things I needed.

How could there be that much blood, you ask yourself.  It was nearly 11 PM.  The room was in half-light (J wanted it that way,) and I couldn’t get J to raise his hand above his heart.  He wanted, of course, to hit himself.  It took about ten minutes, but I finished dressing the wound, and -in another ten minutes- I had convinced J that there was no way he was wearing his wrist brace, and there was no way that I was going to stand for him hitting himself to get the brace back.  Nope.  No way.  Non-negotiable.

I explained that the skin would keep coming off if he didn’t follow my instructions, and then we’d have a serious issue in our hands.  I used the word DOCTOR, and I said that Dada would have to stay home to take him to get checked.  A few deep breaths later (J’s, Dada’s, mine) and we were all calm and ready for Mike Mulligan and His Steam Shovel.  I knew J was feeling better (and calmer) because he asked me to leave the room for story time.  While that was happening in J’s room, I went to check online that I’d done the right thing to address J’s injury.

Once Mike Mulligan was done, I went back in, kissed the walking wounded, and went to bed to read a while.  The thing about having children (a thing people mention but doesn’t quite sink in until you’re in the thick of it) is that you will never sleep like your normal, young, childless self ever again.  Even when they’re adults, you will have the ability to wake up at the slightest sound…I was ready to be vigilant all night of J removing his bandage.  I didn’t want to wake up after a worry-less night to find that he was in distress, his blankets bloody, and his anxiety at an all-time high.  I was awake when J marched into our room, at around midnight, to check Dada’s closet.

The checking of Dada’s closet is a nightly ritual.  Sometimes J is satisfied looking at the open door of the closet and seeing Dada’s clothes laid out for the next day.  Last night, in an attempt to mollify J while I tended to his wound, Dada rushed to his closet and hung the first shirt he could find, coming back to help me almost immediately.  Of course, J had walked out of his room, hand bloodied, and peeked at the door.  He returned, it seemed at the time, satisfied.  By midnight his mind had put two-and-two together: the shirt was not one Dada would wear to work, and there had been no pants hanging there…he came to correct this error.  Out came a nice shirt and a pair of trousers, and off he went to his room.

This morning he was up at five, bandage still on, and telling us to get coffee and Dada to leave for work.  I put a timer on for him, and then returned to check his hand.  The wound is an angry-looking thing, but he allowed me to clean it, and he allowed it to dry before I dressed it again.

I’m sure it will be a day of negotiation, appeasing him, helping him relax, calming his anxiety, but…at least it’s something we can address from the physiological and emotional standpoint.

And we’ve been able to reason with him…with next to no SIB.

I call that progress, no?

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Standing on the dock. Hand raised and ready to wave goodbye to the “worst” year ever…

There is, I suppose, a sense of how 2016 has sucked bricks through a cocktail straw.  Bad year.  Bad, bad year.  Yeah, it has been less than stellar, but…has it really been THAT bad?

I guess it’s all a matter of perspective.  I will not say I enjoyed it fully.  I didn’t.  It was a year of setbacks, losses, shocking turns of events.  And that’s not even counting a very nasty presidential campaign.  We got rid of cable.  We don’t watch TV.  That’s how negative the effect on our blood pressure and mood was.  We are content watching Hulu, Netflix, Amazon Prime and Acorn TV.  Not a Kardashian, Jenner, Trump, Clinton, Teen Mom alumna, Lohan, reality show pseudo-celebrity in sight that we don’t want to witness.  We read the news, yes, and we keep up with world events, but we don’t let the rest of the sprinkles, nonpareils, etc. interfere in what we do on a daily basis.

Well, we TRY to ignore the sprinkles and nonpareils, but they sneak in there and you can’t always dodge them.  We get the odd Kardashian selfie, the latest celebrity divorce, the hottest fashion trend that makes no sense.  They never “take,” but they do turn up…

Georg Wilhelm Friedrich Hegel (possibly my least favorite philosopher) is one of the many who has stated that we learn from history that we learn nothing from it.  Add to that list Santayana, Hawking, Churchill, Hume, and many others.  I’m pretty sure Kermit the Frog has said it, too…or Linus from Peanuts.  It is true: we tend to go back to the same mistakes over and over, thinking all along that we will get a different result.  Einstein, in fact, said something about this being the definition of insanity.  Go figure.

So we entered 2016 full of the hope that is fed by hubris.  We were pretty confident that Risperdone was out of our lives, that we had J on an unerring track to unqualified success, that we had figured out the graceful way to segue into the new stage we were all facing at the time.

In quick succession TGG moved out (angrily,) my father passed away, I started having health issues that escalated, J’s school years ended, our grandson was suddenly removed from our family life (very little we could do there,) Dada’s job started going sour, another grandchild is on the way, SIB and anxiety made a triumphant return (like one of those characters in movies that you are pretty sure are DEAD and then rise from the ashes to stun the audience,) and we’re back on the med…and lots of bandaids..and a wrist brace…and that’s just J…we’re anxious, too.

If you look at 2016 from the wider angle of world events, yes, it was kinda bad.  Violence (which has never really been absent, has it, but is now more obvious and more present because we hear about it immediately and it’s dissemination is intended to scare us,) illness (I’ve had dengue fever…a couple of times, actually…but I was worried about Zika…because death,) riots provoked by social and racial discontent, the economy, earthquakes, flooding, fires…

Has 2016 been “that bad?”  I thought to myself of events that I consider terrible: the Johnstown Flood of 1889 and the Galveston Hurricane of 1900.  I read David McCullough’s The Johnstown Flood a few years ago; for the Galveston hurricane I read Erik Larson’s Isaac’s Storm.  With both books I was properly shaken by the impact these events had when they happened.  I decided to look up events that took place in both years.  Galveston and Johnstown were probably the “worst” events recorded at the time…and yet they were not the ONLY bad things that happened.  They were, at the time, not as widely broadcast as everything is now, but they were news items that definitely deserve attention even now because there was something massive to learn from each, and -hopefully- a lot has been learned.

Personally, 2016 was not my favorite year.  A lot of unpleasant, sad, negative, regrettable things have taken place, and we can’t go back and change them.  But the one thing everyone is saying about 2017 is that they hope it will be better.  And it might.  Who knows?  Generally speaking, the world is pretty much deteriorating in terms of quality of life and safety, isn’t it?  You can no longer say “I will go to the mall/the movies/the park and come out without something unpleasant happening.”  The world is full of uncertainties, and we run risks on a daily basis.

That doesn’t mean we shouldn’t start every new endeavor without hope of success.  Our new endeavor is 2017.  We don’t get a do-over for 2016 (neither in the personal or world level,) but we have a whole year ahead of us, and we can work with it as we go along.  Granted: 2016 will have influenced some of it, and its repercussions will be felt.  In its defense, so will 2015’s, and -in some cases- 1999’s, 1977’s, 1968’s.  History keeps happening.  It happens to ALL of us, and it happens to EACH of us, and we are all tangled in it.  It’s going to happen until we are out of the game, and the purpose of the game is to keep playing…even if the bulk of the action is taking place elsewhere on the field, or if we hate the rules because they keep changing.

We are ready.  We don’t know what’s on the other side of 2016.  All we can do is look ahead.  Maybe there will be less med, less SIB, more calm, packing up our stuff and moving, a new job, health, bad weather, loss and love and the whole shebang.  The thing about hope is that we have to feed it, and we have to nurture it.  When things look bleakest, saddest, meanest, angriest, most hopeless…that’s when we take out the good suet to feed that little bluebird of hope and happiness.

J will be fine.  What kind of “fine” that will be is up in the air.  As children we all love balloons filled with helium, don’t we?  We are fascinated by their ability to lift and float, and sometimes get away from us.  When we see them deflate and lose that ability to rise on their own, we are sad and disappointed.  Reality will eventually deflate 2017 a little (after all, we will no longer be outsiders looking in…we’ll be full-time residents!,) but for now let’s watch it loom ahead, rising on the helium that is hope.  When it looks a little deflated, let’s imbue it with some more…just keep hoping.

After all, my friends, there are as many quotes about what courage is as there are about how dumb we are for not learning from history.  It all boils down to hope, doesn’t it?  And I am hoping, hoping…hoping…

 

Some (not necessarily wise) thoughts on Carrie Fisher, and the nature of Friendship…

As we sat, bleary-eyed, sipping our coffee this morning, Dada and I were pondering the sad news of Carrie Fisher’s passing.  She drowned in moonlight…strangled by her own bra. We were upset (but not surprised) by the fact that already there is one “friend” who has told the press she had relapsed and was no longer sober.

Allow me, please, to unburden myself:

I loved Carrie Fisher.  As a twelve year-old girl sitting in a dark theater watching Star Wars with my dad, I was thrilled to see a girl who could shoot a hole in a bulkhead to (kinda…sorta) “rescue” herself and the heroes of the story.  Granted, they ended up in the trash compactor, but that’s beside the point.  Princess Leia showed initiative while the men shot blindly trying to kill the Stormtroopers and couldn’t find a way to get out of there.  She was wearing a long white dress, her hair in buns, lip gloss, and she was a bad-ass nonetheless.

Of course, in real life Carrie was more of a mess.  She had issues galore.  Her family had experienced a traumatic divorce in spite of their “picture perfect” life.  Seriously: who cheats on Debbie Reynolds?  Eddie Fisher…with Elizabeth Taylor.  And thus started Carrie’s more complex tapestry of incidents that shaped her forevermore.  We all saw it.  We all witnessed her life in much the same way we witness every other celebrity’s life.

When I was 22 I read Postcards From the Edge and, having a complicated relationship with my own mother, found some solace in the humor with which Ms. Fisher addressed her own story.  She was funny, witty, sharp as a tack, and unapologetic about who she was.  I’m sure it took her quite a bit of time and effort to accept that she wasn’t just Debbie Reynolds’ daughter, not just the product of a messy divorce, a Hollywood childhood, early success.  Like George Michael a couple of days before, Carrie will now die several times over: not only has her body stopped working and the person she was has ceased to exist in the plane of this world; now she is going to be crucified and dissected by people who will make a buck and get attention (even an unnamed source gets attention) for sharing things that are no one’s business.

People are shitty.  Not all of them, but enough of them are to justify that statement.  Whether Ms. Fisher had relapsed or not, what business is this of the rest of us?  Her daughter might have known.  If she didn’t, does this help her mourn?  How about her elderly mother?  What good does it do to say (as a “friend”) that you knew something about Ms. Fisher that you will only reveal now that she is dead?  Pardon my bluntness, but it is the fucking holidays, and a beloved daughter and mother has passed away at the still-not-that-old age of sixty…can’t you just keep the lid on your meanness and let these people mourn?

This is why “friends” are such a rare thing.  I don’t have a lot of them.  I never have.  I had more, but some have -over time and due to circumstance- moved to a different category.  It is not that I don’t love them, but…we no longer share a common experience that allows us to understand each other, to communicate with the same ease and intimacy we used to share.

Let me explain, please.  My best friend is my husband.  No, this is not bullshit.  This is not that idealized image of “my best friend is my husband” and everything is butterflies, rainbows, unicorns and moonbeams.  This is “my best friend is my husband” because he has my back, calls me on my bullshit, tells me the truth even when I don’t like it, allows me to tell him the truth when he doesn’t want to hear it, keeps very few things from me (we all keep ‘something’ because we think it gives us a degree of control,) and occupies that space that used to be reserved for my female peers.  Yes, he is my husband, and -you could say- a lot of that comes with the territory, but it often doesn’t.  I don’t just love him in a carnal, romantic way…I love this guy as a human being, and if I ever did something truly terrible that required conspiring with another person, he would be the person I would trust most.  When we have an argument (regardless of how big or small,) I talk about it with him.  It’s messy, but it’s honest…and we do talk a lot…about the good, the bad, and the ugly.

My other “friends?”  Well, yes, I love them.  I can talk to them.  Is there brutal honesty?  No, not really.  People don’t want to hear the bad stuff, do they?  People want to think that they know, and understand, but they barely scratch the surface.  If you try to be honest and tell them things you need them to know so they will “get it,” they interject with “I know” because it’s easier than admitting that you exist in a diorama they have created for you.  The truth is that there are different kinds of friends: the ones you think you have, the ones who think they have you, and the ones where the feeling is mutual.  This last sort is the rarest, most precious of all…

This morning, while sipping coffee and talking about Carrie Fisher’s shitty friend, we were admitting how we truly hate that people think our life is one way, and won’t let us tell them it’s another.  We hate even more that we’ve given up on explaining, on trying to illustrate.  Why have we given up?  Because people cry watching Schindler’s List, but they don’t cry when they read about the Holocaust.  Because difficulties being faced with the right lighting, musical score, by beautiful people who look ethereal and inspiring while doing it are so much more moving than picturing middle-aged people struggling to bathe their adult son (who is covered in hair) while getting soaked because water runs down your arm.  That you do this dressed in the same pajamas you were wearing when you went to bed last night (because you’ve had a hectic day that other people wouldn’t understand and you haven’t changed or brushed your teeth even though it’s already four PM) and you are singing Winter Wonderland using funny voices and foreign accents because it distracts your kid from hitting himself for a moment or two…  Oh, it’s something so unbelievable, so impossible to grasp…

And yet it’s true.  People see your Facebook profile picture and they don’t understand that you got really lucky with the light, and that -had it not been for that- you would still have the picture of your slippers, or your books, or the Christmas tree.  But you got lucky…you had THAT moment, and it reflects what you want to think your life looks like even though you know that it’s really completely different.  You don’t cling to that image.  You know it’s a brief fortunate moment captured digitally to please your ego.  You know that you’re still wearing the same soup-stained shirt because, as you were about to change, some minor crisis diverted you from your purpose…

A friend understands that shit.  A supposed friend will comment “but you know her shirt was soup-stained, and she was barely holding it together two minutes before the light hit her just right and her husband took that picture, right?  Her life was a mess…”

Carrie Fisher knew she was a mess.  Carrie was proud of this knowledge.  Not of being a mess, but of knowing it, and of working on it regardless of how difficult it could be.  She was admirable in a very human way, and real friends know this about us, and don’t parade whatever “intimacy” they think they are privy to just to be the center of attention briefly.  That’s why I feel sorry for people who think they know and yet know nothing.  Intimacy is knowing and being discreet.  If I tell you “my shirt was soup-stained and I got lucky with the light” my husband will say “yes…her shirt was soup-stained, we got lucky with the light.”  We know our life is a mess…we don’t need others to state the obvious, or to broadcast what they think will make them look knowledgeable.  A person who is actually knowledgeable reserves their knowledge for something truly worthwhile, in my humble opinion…

OK.  Thanks for your patience, and I leave you with a quote from Ms. Fisher:

“Now I think that this would make for a fantastic obit—so I tell my younger friends that no matter how I go, I want it reported that I drowned in moonlight, strangled by my own bra.”

 

Another Twelve Days come and gone…

We treated Christmas Day as we do any other Sunday.  Of course, I admit this was not intentional.  It’s not that we “missed” Christmas, but J had an early morning meltdown and we decided to turn the dial down and do Sunday as Sunday is usually done.  After about an hour of pure, unadulterated, overwhelming strife, J calmed down and we threw a little Christmas in here, and then a little Christmas in there until we had a nice Christmas dinner that passed for Sunday dinner.

Yesterday we braved the “Boxing Day crowds” that amounted to two people ahead of us at Target, and three at the arts and crafts store.  The line behind us at each store was non-existent.  All the chaos witnessed in other necks of other woods was absolutely absent at the time we left the house, and J was happy and he came home to relax.

The Christmas morning meltdown is easy to understand.  Dada had been home since Wednesday evening, a mini-vacation, and J was confused.  On Thursday morning we went for a medical appointment (mine,) and then for a very small bit of shopping at the grocery store.  On Friday we went to the movies.  We watched Rogue One.  J leaned back on his chair, munched on his popcorn, and smiled contentedly.  He just enjoyed the notion of being at the movies.  On Saturday we went out for a bit, and then TGG came with his family.

This was the first thing to throw J off.  He didn’t leave his room, but TGG went in with the kids, and that was out of J’s comfort zone.  We had a quiet Christmas Eve with our Twelfth Day presents, and then we went to bed.

Christmas morning didn’t have chiming bells.  It had a growl overheard through the baby monitor.  Then we heard the thumping.  We did our best to defuse the situation, but meltdowns have to run their course, and this one took a while.  By noon we had sort of evened our keels, and the rest of the day seemed better.

Today Dada went back to work, and J and I started putting away the Christmas tree ornaments, the lights, and the Rudolph the Red-Nosed Reindeer and Charlie Brown Christmas accoutrements.  The Christmas tree forest, the village, the train tracks (which have grown and grown) remain.  The rest is slowly being reeled in to make way for the New Year, and to make way for the Three Kings’ Day tradition.

I’m sure this portion of the year will be a bit of a slippery slope.  The holidays overwhelm just about everyone.  They also depress a lot of people.  We are doing our best to help J cope with the anxiety he might be feeling.  We understand that, irrational as it may be, he has trouble seeing TGG with a family of his own, and we can try to help him understand, but that doesn’t mean he will be able to maneuver through the emotions with ease.  The best we can do is try.  The best we can hope for is increasing degrees of success.

So we work on helping him, and helping ourselves in the process.  Now that the actual Christmas holiday is over, we can start taking things back to the daily routine that soothes him, and make adjustments from there.  He was happy today gathering up the tree lights and putting them away in the new storage box we bought.  The little tree (ok…the branches cut off from this one) in his room will go away today, too.  He might want to keep the lights, and we’re fine with that.  Light seems to be a soothing thing for J…especially when he can control it.

J was happy with his presents.  He tried taking some of ours, but we managed to prevent him from achieving his purpose.  He enjoyed helping in the kitchen.  He had fun with the tree and the lights.  He liked (LOVED!) decorating a gingerbread house.  He stole some of the candy, but that was to be expected.  All in all, aside from being overwhelmed at a certain point, he did great, and he had fun.

But we learn something new every year.  We figure something out with each passing holiday season, each run-of-the-mill month and day.  We are in a perpetual state of learning what we need to improve or change.  Yesterday, little clearance-shopper that I am, I found a little paper mache cabinet that has 25 drawers…and I will decorate it, and in each little drawer I will put an activity of each day leading up to Christmas next year.  I will mark the days when Dada will be home.  I will put little things that J can enjoy…a movie to watch, a craft to make, a task to complete to get us ready for Christmas.  You’ll see…I’ve figured out that some of the randomness of the season upsets him, and I will work on giving him a whole set of anchors to choose from.  That’s my goal, anyway.

We have plans for 2017.  We are hopeful that they will come to fruition, and that J will benefit from them.  For the moment, this last gasp of 2016, we try to organize our little household to advantage for all.  We try to slip into the usual routine so our boy can have his center…  That his center (and ours) is slightly off-center is fine.  The important part is that there is a center…regardless of where it is.  That’s goal.  That’s the aim.  That’s the all-important purpose of this game we play day after day.

We survived Twelve Days…a little bruised, a little humbled, but we survived.  Our little ragtag band of desperadoes has pulled off another holiday, and is getting ready for the next, and the one after.  It’s all we can do.  It’s all anyone can do.

And off I go to more chores supervised by (who am I kidding, right?  HE is the boss) J.

 

 

Last Day of Autumn…

Winter does not officially begin until tomorrow.  All this cold weather has been a tease, a come hither look from Mother Nature.  My bones and joints don’t appreciate it, but there it is…unless we move to a tropical climate, this is now the story of my life.

The first seven days of Christmas have been a success.  We have enjoyed the quiet pace, the relaxed mood, the adding tracks to the set-up in the Christmas village inside the tent…and trees…and assorted Lego concoctions that give interest and texture to the whole shebang.  J is happy.  Every time I bring another thing to put in there, he cranes his neck and, from the safe perch of his couch, gives instructions on what to do next.  Passenger cars have been added to the train, a rather large tree sits in the middle with lights rising up from the base and getting lost in the “sky.”  Five minutes sitting on the floor looking at all we have put in there are guaranteed to make you happy…

On Thursday, the 22nd, we will make the pilgrimage to the movies.  Our schedule for the week is thrown off because of Christmas Eve and Christmas Day.  J gets his Saturday and Sunday outings on Thursday and Friday.  We adjust to make his life more balanced, and hope that this is enough.

We think what we’re doing is working.  The meltdowns and SIB have dissolved into near-nothingness.  If he’s upset or anxious, the reason for his mood is easier to determine.  It is also easier to correct.  At five a.m. I hear him get up, go to the bathroom, and then stop at the hallway closet to get fresh bandaids.  He changes them himself.  No muss, no fuss.  J is, once more, in a place where he can exert some control, and this makes everyone happier…

Our fine-tuning of his diet is sort of working.  You don’t gain weight in one day, and you don’t lose it in one day either.  We are running, on average, about 2 miles with the Wii, and we are doing calisthenics that are helping improve J’s balance.  Still can’t get him to lay flat and not complain, but I respect this difficulty and work around it.  Some of his workout looks like those public television workouts for elderly people who have mobility issues, but a mom’s gotta do what a mom’s gotta do.  It is better to do a bit than to not do anything at all.  That’s the idea I’m latching on to, anyway.

Today I am hoping to do some baking.  I say hoping because I keep putting it off.  My hands, see, are not what they used to be.  The doctor has chosen fibromyalgia as my malady, but we are not sure that this is correct.  The idea of lupus was thrown out the window because I am no longer a woman of child-bearing age.  We wonder why not one doctor has X-rayed my hands to see if, perhaps, there’s some sort of arthritic thing going on.  Of course, no matter what I say -and I say plenty- no specialist that has dedicated years and hundreds of thousands of dollars to getting trained to be eagle-eyed for such things will acquiesce when a person with merely a M.A. in Liberal Arts says “are you sure there’s nothing wrong my hands????”  I work around the quirks, but it’s not easy: I can no longer make hollandaise sauce (because the hands “go” in mid-stir and so does the sauce. I can no longer embroider, color, sketch, or play the piano.

OK, I never could play the piano, but if I had been able to, I would not be able to do it any longer.

So my “hope” that I will get to make some baked good is in the incipient stages. I am waiting for the time when my hands are at their best…and this, fingers crossed, will coincide with J’s desire to make biscotti.  We’ll see.

The only thing troubling J right now is his tummy.  He is not sick, but he is not digesting well.  Yesterday I had to explain the concept of “constipation” to him; this is something I’ve done before but didn’t seem to click at the time.  I think now he’s getting it.  He has stated he is uncomfortable, and has accepted the remedies I’m offering.  I’ve explained he has to be patient because, sadly, these things don’t work immediately.  I explained that cheese doesn’t help, and he was not particularly amused by this information.  I explained that water helps…he understands this, and is making sure he drinks enough.  In the meantime, we wait, and he tells me (which is better than being angry and yelling, or hitting himself) if he is going to the bathroom.  I told him that, because he’s having trouble, I will follow closely, and wait to hear if he needs my help.  We are both mortified, but we are willing to work together to solve his issue.

I was thinking about the weirdness of our home life as I sat in the hallway this morning.  I was pondering why people who haven’t seen J in over fifteen years cannot fast-forward that last image they remember and accept the one I describe for them, or the one they see in pictures.  When I say “I cannot talk right now, J is in the bath” they imagine a child of four, sitting hip deep in bubbles.  No one thinks of the adult with hair all over his body, hands the size of holiday hams, deep voice and imposing physique.  I am not bathing a child, I tell them…I am bathing an adult.  It doesn’t quite sink in for the most part.

Of course, this is small potatoes compared to the bigger problems of the whole of mankind.  This problem, in fact, we can manage better because the anxiety and SIB are under better control than they used to be…

And so we move on to Actual Official Winter, and roll gently (over a bumpy road) to 2017…

 

A peri-menopausal woman and a young man with ASD walk into a messy kitchen…

Oh, J and I…we are getting on each other’s nerves this morning.  Only goodness knows why.  No, actually…goodness doesn’t know, but we do…

I think it is a (tenuous) sign of maturity that we have agreed to take a break from each other.  We are both on a timer right now.

It was the mess in the kitchen.  I am not in charge of coffee in the mornings.  I’d say Dada is in charge, but I have the sneaky suspicion that it’s actually the Tasmanian Devil who goes in there and gets things done while I take my shower and drag myself to the dining room.  I generally (and you can blame the time-release caffeine in my morning cup of “revive me I need to be functional” java) don’t realize how messy the kitchen is until I come back down after Dada has left, the beds are made, and J is ready for breakfast.

For us people who drink coffee mornings are very simple, at least Monday through Friday.  We have pressed coffee, frothed milk, maybe toast with butter and jam, or some other sort of quick thing to eat.  If there’s a hot breakfast involved it’s for Dada.  I cannot, in spite of many years living in New Mexico, stomach a breakfast burrito at six-thirty in the morning.    Out of coffee, milk and toast with something spread on it is created a mess that, should such a thing as domestic-affairs CSI exist, would be described as a complex scene.  Remember that scene in The Princess Bride when Prince Humperdinck is reconstructing the sword fight between Iñigo Montoya and The Man in Black?  That’s what I feel like when I step into the kitchen after Dada has gone to work: he ground the coffee here, transported it in the ridiculously-sized container to pour into the French press here, spilled here when the cat jumped on the counter, moved to the dining room table, and poured the water from the electric kettle without turning on the ceiling light…he was lit from behind by the insufficient bulb from above the stove…hence the spill of water HERE, and the wet ground dripping down the side…and so on and so forth.

Please, don’t mutter to yourself that I should be grateful that HE gets up and makes the coffee because I AM.  That doesn’t mean that I have to actually ENJOY cleaning up an amazing mess that is not commensurate with the meal consumed.  The first I do in relaxed lighting (no, he doesn’t turn on the ceiling light,) and with (possibly) Boccherini or Bach playing in the background.  The second I do with J following me as closely as a pilot fish does a shark while making requests for something I’ve already said yes to, and saying GOOD MORNING with every exhalation.  I try to make sense of the kitchen while trying to make sense of six other things, and sometimes I realize that jam hasn’t been returned to the fridge, a cat is meowing loudly and J is running around in very tiny circles trying to keep away from its demands, and the phone is ringing because telemarketers don’t respect the fact that people hate them and don’t want to talk to them AT ALL.

An aside:

Apologies to any telemarketers reading.  I know it’s your job and you have to make a living, but I still hate you when you are wearing your telemarketer cape and invading my mental space with your phone calls.  Yes, I know you have student loans and kids, and car payments, but there is NO right time to call me.  NEVER.  EVER.  NEVER EVER!  And if you are the telemarketer that called the other morning (while I was making eggs for J’s breakfast, picking up plates that had slid out of the dish rack, trying to find the right playlist on J’s iTunes thing, and sliding some bread into the toaster: if you call and say “this is about your Windows,” you totally deserve to be told “they are dirty, but I won’t get to them until springtime so don’t call me to ask about them again.”

And I’m back on the subject.

I think it’s healthy to admit that J and I get on each other’s nerves.  I am not a saint.  I am not Mother Teresa of Calcutta, nor am I some beacon of motherhood that puts all other beacons of motherhood to shame with my efficacy.  Most of the time I really don’t know what I’m doing, or how well I’m doing it.  There are times when I need to walk away from J because I know that his anxiety is going to cause me anxiety, and one of us has to keep it together…this requires a brief moment of “come on!  Seriously?  You are a friggin’ grown-up, lady.  Take a deep breath and get your shit together…”  Sometimes it takes a few brief moments along the same lines.  If there’s hot flashes involved, well, there might not be enough namaste to go around, but I try…

Within the next ten minutes we will be done with our timers, and we will once more stand on the same stage to perform our next scene together.  I think we’ll be ready then.  I’ve agreed with myself that the kitchen is a mess, but it’ll get done when it gets done…probably oh one-ish?  He has agreed with himself that he will take care of the straps on his wrist brace because I have already stated, unequivocally, that I am not going to fiddle with them every five minutes.  We stomped to our corners, we took deep breaths, and now it’s time to mumble apologies, give awkward hugs, and make faces behind each other’s backs.

We’ll be fine.  It’s Friday, and there’s a very small flatbread pizza looming in the schedule for this evening.  All sorts of sins are forgiven when there’s pizza in the horizon, and we know we are “normal.”  In our own way, of course…

I am grateful, and I love my family.  I need more coffee, and the hot flashes suck.  Autism can be a nuisance, and anxiety is a bitch.  But I am grateful grateful grateful and my patience is replenished, and -I think- so is J’s…

Now…to the kitchen!

Oh…it’s cold!

This morning, bright and early, we went out for my doctor’s appointment.  J wasn’t particularly excited about the prospect of leaving the house, but since the doctor’s office is next to Target, he made an exception.

Without the wind chill we were at 13 degrees when we left the house.  Not much had changed an hour and ten minutes later when we started making our way back.  We had parked the car in the garage last night, and this had only ever happened before when we had a Tornado Warning, and it was hailing.  We drove straight into the garage when we got home, and J scampered into the house quite agilely.  For J to scamper it takes quite a bit…he stood in the dining room, encased in scarf, gloves, hat, earmuffs and jackets until he felt like he could trust the temperature indoors.

None of this should surprise us.  This is not our first winter here, but we have definitely grown accustomed to being inside the house rather than waiting for buses in the wee hours of the morning, or walking against the wind on our way home in the afternoon.  J found his fleeciest fleece pants, and his most thermal thermal top, and he bundled up before returning to the dining room.

That the forecast predicts sixty degrees for Saturday, and snow for Sunday is not surprising either.  The thermostat will be set at 68 degrees during the day, and at sixty-five at night until winter passes.  Such a big townhouse with three levels (if you’ve been reading this a while you know the basement is the frozen tundra, the kitchen level is more temperate, and the third floor is tropical) cannot be kept satisfactorily warm or cool depending on the season without the assistance of multiple blankets (walk around this house from top to bottom and you can gather layers as you move towards the basement,) or box fans (the third floor usually sounds like a turbine test facility during the summer.)

The Second Day of Christmas was successful.  We baked cookies in the afternoon, and J was looking forward to the after-presents dessert.  Last night’s dinner was a typical Puerto Rican dish, and J stood in the kitchen (smiling from ear to ear with anticipation and delight) while we cooked. He was so giddy we even took pictures.  Every time I lifted the lid of the pot he would open his mouth like a baby bird…but he ate a prudent amount of food (he was reminded that there were cookies,) and he giggled throughout the meal.

It’s nice to see him happy.  It’s nice to see that he is enjoying those little moments.  It’s also nice to see his sense of humor and funny bone are in excellent shape.  Today TGG stopped by and I made a comment about something J had done to confound us.  J, who was sitting eating his lunch, started giggling.  I told him “yeah, you think you’re funny.  What you are, my friend, is a brat!”  And J then started laughing heartily.  It was contagious.  Before long the three of us were laughing, and -once we slowed down- J would suddenly get a fit of giggles whenever he looked at us.  I know…you had to be there, right?

Tonight we are making turkey meatball soup.  J has been in and out of the kitchen all afternoon, inspecting what I am doing to prep for that.  Once in a while he stops in front of the glass doors and says BRR, and dashes back to the basement.  His mood is light.  He is happy with his Christmas village, and our ins and outs from that room.  He lets us cuddle up to him, and is very affectionate, until he’s tired of being affectionate and, laughing, kicks us out of the room.  As I said: he’s a brat.  An adorable brat, but a brat nonetheless…

The only fly in the ointment today was that J wanted pizza.  We told him he could have it tomorrow.  He got angry.  He didn’t have a meltdown.  He had a small tantrum.  It’s lovely (and very helpful) to know the difference.  Tantrums are, in a very real way, much easier to handle than meltdowns.  A tantrum has an obvious cause, and it is a battle of wills between he who throws it, and those who are on the receiving end.  A meltdown is an existential issue; a battle with something that is hard to define, hard to process, almost impossible to control.  The factors involved are many, complex, and inexplicable to those who don’t experience meltdowns as a “way of life.”

A tantrum is also easily resolved with a simple, firm NO.  Once J saw we weren’t budging, J accepted that PIZZA is tomorrow, and he moved on.  OK, he was miffed for ten minutes, but then we made breakfast burritos (small ones…like the smallest breakfast burritos you’ve ever seen, and they had pureed carrot in them) and he forgot his displeasure.  That is how we confirm that a tantrum is what we saw.  A meltdown wouldn’t have found consolation or satisfaction in a burrito…much less with pureed carrots.

And that’s where we are.  On the brink of making meatball soup (that has pureed carrot in it, too,) and getting ready for Third Day of Christmas presents.  Inching forward a little more every day, sitting for a bit to reassess once in a while, hoping for the best always….