And on the Eighth Day of Christmas…

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


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

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

No matter how many times we tried.

He was up.  UP, UP and AWAY!!!!

We tried a timer.

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

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

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

We checked his temperature.  It was normal.

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

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

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

He was just up.  Up and insistent.

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

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

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

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

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

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



The Second Day of Christmas has arrived…

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

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

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

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

Methinks this will be a “thing” now.

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

It is.

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

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

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

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

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

A tree! A tree! A Christmas tree!!!!

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

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

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

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

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

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

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

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

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

It feels good……..

From the bad, good comes…

J got sick.  Really, really sick.  It was sudden, and it was brutal.  Poor guy went from Whee!!!!! to a holy-cow-wow fever in less than two hours.  And then came the stomach issues…

We went to Urgent Care.  No flu, no infection, no strep…  We came home.  It got worse.

We ran to the ER.  We hadn’t done that in quite a while.

J was feeling poorly enough that he didn’t argue.  He surrendered to all the ministrations of the healthcare professionals without so much as a peep…and one of them was the nurse version of Columbo..


without the redeeming quality of sharp intelligence behind the apparent bumbling.  Ok, not even the bumbling was apparent.  It was real.  She freaked us out, but we couldn’t say anything because we needed J to stay calm.

The urine sample left on the counter for the whole time we were there was a wee bit much (no pun intended), and the trail of used alcohol wipes was not particularly comforting.  I kept thinking to myself that we need to time these things better and get a fresh shift when we go, but one cannot really time these things…

So we had to let J get his vein poked four times…twice for blood, and twice for an IV.  He was not stoic about it, but he kept the anxiety to a minimum.  He wasn’t feeling well, but he understood that he needed to let himself be poked so he could feel better.

And then came the part where they suggested an abdominal scan.  I had wondered if maybe it was appendicitis, but I wasn’t sure they’d take me seriously.  They did.  The kindest tech in the planet came over to get J, and had the most soothing, comforting attitude without being condescending.  I took the Proloquo and immediately added a picture of the scanner so J could start understanding what was about to happen.  He wasn’t happy, but he let us take him.

J doesn’t like laying flat.  I think it makes him dizzy.  He sleeps at an angle…always has.  His sit-ups are more like lean-forwards.  If you ask him to lie down the immediate reaction is to kick himself upright with his legs.  Being moved from a gurney to the bed for the scan was not something he wanted to do.  He sat down, yelped, and got up again…


He let me persuade him to relax and lie down.  He had his head propped up, and his legs propped up.  He wasn’t happy, but he did it.  We took a moment (thanks to the lovely, lovely technician) to look at each other, breathe deeply, and calm down.  Then J let me position him, saw how I got the gown on to cover my sensitive bits, and I stood next to him, holding his hands over his head while he listened to his iPad and breathed.  He breathed deeply.  He breathed calmly.  He would move his eyes and look at me.  He would squeeze my hands…

It was all very quick.  He was as good as gold.  I was close to tears with gratitude for the moment.  When I went to let go of his hand so I could go around to help him get up, he squeezed my hand again, and wouldn’t let me go.

The beautiful thing about this moment is that J wasn’t freaking out.  He was calm.  He was relaxed.  He had done something (to us) extraordinary, but he was fine with the whole process once he took those deep breaths and we connected.  The beautiful thing about this moment is that J TRUSTED me, and I could tell that he was wanting to prolong it for a little while longer.

Six hours after we got there, we got sent home.  It’s just a nasty stomach bug.  A REALLY nasty stomach bug.  J arrived here with the intention of going to bed, even though the sun was out.  He accepted that he was to eat according to the list provided, that he had to take one medication to help him stop throwing up, and that he could only drink water in smaller amounts until he was feeling better.

Today he has improved, and is more himself.  Loves me one minute; hates me the next.  Wants me around, hounds me, kicks me out of the room.  He has FINALLY learned the ASL for SICK, and now says it over and over.  SICK?  SICK?  Not quite so much as yesterday, son…not quite so much.  He’s slowly been recovering from the ugliness he was feeling, and little by little he is eating more things from the list, and accepting still that his regular diet is a no-go.

Dada, of course, is now thinking he’s ready to get sick.  I, of course, am equipped with gloves, Clorox, Lysol, and the caution that comes with the realization that I cannot let this go around and around and around.  You pick up a water bottle, you write your name on it…it’s yours and yours alone.  Time to change sheets?  Time to wash towels?  Time to check if a butt is properly wiped?  GLOVES!  I am a one-woman cleaning crew on a mission…

In a few days, when everyone is better, I will swap out the toothbrushes, deep clean the bathrooms all over again…and we will, maybe, get down to the business of Twelve Days.

Right now we are just trying to get back on track, and helping J recover from this nasty bout of whatever viral thing it is he found and brought home randomly.  The cart-wipes they offer at the stores?  We’re using them.  The antibacterial goo that doesn’t really do anything?  We’re using it.  Seeing J sick is grueling emotionally because it’s so hard for him, even with the Proloquo, to put into words some of his misery…

But we’re getting there…we’re getting better.  We’re dealing with it…and our son TRUSTS ME!

Every morning, at around 9:30, I ask J to help with the books.  The project is simple but tedious, and J seems to be enjoying both things.

As I have mentioned before, we have a lot of books.  Those books are catalogued in a spreadsheet, and they are assigned a cube in our library.  We have them listed by title, and by author; we have a list of which book is where.  That’s as far as it goes; I have not succumbed to my inner frustrated librarian and gone Dewey Decimal on the whole thing.

When someone (namely Dada) takes a book out and doesn’t put it where it belongs, I end up with a pile of books on a table in the Diogenes Club (don’t ask), or with books that have been shelved in the wrong cube…a mistake that usually goes undiscovered until I am looking for the same book and cannot find it anywhere.

J’s job is to stamp each book with the cube number it’s assigned to, and to tamp it with a letter G to indicate it is ours.  Ex Libris stamps are lovely, but we couldn’t make up our mind as to what we wanted on it so we went with just a regular old G.

Depending on the type of book that populates each cube, J can do anywhere from 6 to 11 cubes in half an hour.  He loves it.  He sets up his rubber stamps and ink pads on the dining room table, and he helps me move whatever batch he’s working on next.  When he’s done, we carry the books back, and grab another batch.

In the afternoon, after his bath but before his snack, he does another half hour of book-stamping.  His smile broadens and gets brighter as he progresses with this job he’s been given.

I’m pretty sure that he feels included in something that seemed very much outside the realm of his participation before.  He has always liked books, and he enjoys being read to, but the books in the general library didn’t seem to interest him much.  That we have great independent and used-book stores here helps matters.  J has more than B&N to choose from, and he really likes the opportunity to explore these places freely.

Dada says that once J is done with the books we already have, he can take care of doing the same for whatever books come into the house.  I am sure that he will not run out of things to be involved in with the library anytime soon.  Books are to us what shoes were to Imelda Marcos: we can never have enough.

Of course, there are always more books that belong to J, and that he keeps in his TV room upstairs.  He can stamp those, too, but with a J.  This is something he recognizes so keenly that we have to remind him he’s not the only J in the world.  Perhaps I will have a custom stamp made with his handwriting so he will be even happier with the project.

On Tuesday we went to J’s psych appointment, and he did very well.  It was the first time we rode a cab here, and he was relaxed in spite of the more complex traffic patterns in this town.  Because the appointment was later in the day, we met with some hectic driving (including our driver’s), and it was already getting dark by the time we got home.  I made the next appointment for early in the day as I think it will make it easier for J.

The transition to cooler-weather clothing has been easier than expected; the fact that he now will gladly wear a polo shirt voluntarily has been a happy surprise.

We are hoping that we will soon find a group activity for him outside of home.  We think he’s ready to meet some peers and interact with them, even if it’s once every couple of weeks.  J is a person who loves his routine, and he feels comfortable when he’s allowed to ease into new things.  Since school ended he hasn’t had a group of friends, but we know that he like it when he finally finds one.  Because this takes adjusting and learning other people’s rhythms, we know he will come home the first few times wanting to cocoon and relax.  This is the pattern…

J’s life, like ours, is about adjusting to what is new, what is new again, what crops up unexpectedly, and what slowly unfolds announcing itself.  We are all working on being the best current version of ourselves, and we feel we are succeeding.  We expect a lot from ourselves, and from each other, but we’re taking our time in building the life we want.

A year ago we were falling apart.  A year ago we didn’t understand a lot of things.  Now we are in a better spot, looking at things from a better angle.

Little things give J a better grasp of what permanence is.  Rubber-stamping books, drilling holes in walls to install shelves, painting rooms, standing outside discussing next spring’s plantings, and talking about how to make the garage better…  All this tells him we’re here to stay, and it gives him peace.

We work on it everyday…and it seems to be working…

Six weeks later…

I finally spoke to my stepmother yesterday.  She still has no power, no running water, no cell phone service unless she drives to a town twenty minutes away from where she lives, and she is now alone.  Like many other young people who don’t want to lose a term or a school year, her granddaughter moved to the States.

Six weeks later…and Puerto Rico and the Virgin Islands are still reeling from being smacked head-on by a massive hurricane.  If you have ever lived on an island, you know how it is when something happens and you’re far from hubs of “civilization”.  If you have ever lived on a small island,  you know how the distance between the two farthest points can seem greater when things are bad.  If Puerto Rico got royally screwed by this storm, the Virgin Islands (which are quite small in comparison to the 9104 km sq that makes up PR) must be in really, really, really, REALLY bad shape.

We are still waiting for packages we mailed in early October to be delivered.  For all intents and purposes, the packages are in the post office, but they remain there because when someone goes to claim them they “can’t be located”.  This doesn’t make sense to my organization-oriented brain, but there must be a kernel truth or I am having my leg royally pulled (and manipulated) by people who need the help, but want it taken to them…  Sigh…

Did I tell you the story about J and the waitress?  I don’t know if I did, but I will do a quick recap for you now:

A few weeks ago we tried a new place for lunch.  It was J, Dada and myself, and there were two other tables with customers.  This is a very informal place with quick lunches for busy people.  Our order was taken by one waitress, and another was serving nearby, but every time she walked past she would glance at J and smile.  Very pretty girl; young, sweet-looking, very kind demeanor.  At some point we noticed she had become our server, and even the owner came out to say hello.  J, of course, was focused on his food, and in his little internal universe.  He was smiling, though, and he was happily enjoying his meal.

We asked for the check, and the young lady brought it…she bent her knees a little to take a peek at J’s face.  She said: he has beautiful eyes.  I turned around and said to J “she likes your eyes”, and she then said (with a HUGE smile on her face) “it’s everything…his eyes, his eyebrows, his face…EVERYTHING!”  J just kept smiling as he looked down at the table.

We thanked her…we were tickled pink.  If she did it for the tip, good for her…she got a nice one.  If she meant it, well, even better…J IS beautiful and he deserves to be noticed by pretty girls, even if he can’t do anything about it…

There are bad things happening out there: shootings, violence of all sorts, hunger, strife…and then you find a nice little thing.  And it makes you smile, and you say “yes, that was lovely…thank you!”

Maybe those packages will materialize today.  Maybe things will get better back on the island.  Maybe J will look up at a girl who smiles at him one of these days, and maybe he will understand that someone has smiled because of him…or just to make him happy.

Even when it’s not all good, it’s good…



The old normal is the new normal…again…

Dada started working yesterday.  J was surprised by this development, but he took it in stride…at first he was mildly confused (“what?  We’re not in a perpetual state of vacation????  I wasn’t consulted about this!!!”), then he moved into guarded acceptance (“Ok, go to work, I guess.  We’ll be here…waiting!  We can do stuff together…right?  Am I right, lady who is usually around and has looked less frazzled than I’m accustomed to in the past few months?”), and into being over it by six o’clock last evening (“Where is he?  Why isn’t he here?  He has to go BACK?  Tomorrow?  What madness is this????????”).

Interestingly enough, Dada reports that this is pretty much the way things went for him, too.  He likes what he’s doing (even though he’s new to it).  He wouldn’t mind getting the position (or a similar one in the same place) on a full-time basis.  That being said: going back to work (wearing a tie and slacks) after months of walking around (in jeans covered in paint, t-shirts with holes in them, and socks) at a more leisurely pace, and with the benefit of choosing his activities for the day can’t possibly be easy.

My life, with Dada working or at home, doesn’t change much.  I’m still the one who figures out what goes where, when and how things get done, and I am always with an eye peeled and an ear cocked for the next development.  Laundry always has to get done; meals have to be cooked; someone has to figure out what thingamajig is required to make life more, well, efficient.  That’s me…whether I have Dada at home (which makes it possible to delegate a task here and there), or he is at work (making it possible to not be distracted by one more person who requires my attention).

And so our life goes back to the rhythm that it was accustomed to before we shook it up, tossed it in the air, and grabbed it with a whoop and a holler.  We can hardly believe we’ve been in this house for exactly three months, and that we were in an entirely different city or state before then.  Dada looked surprised when he realized he’d not worked for five months, and then he looked thankful that he could (with extreme economies and limited resources) afford to do that.

The truth is he needed it.  His old job was going to kill him either very slowly (with the gradual onset of high blood pressure), or quickly (a stroke or heart attack).  Our marriage was suffering, and so was our family life.  It hasn’t been a bed of rose petals (the idea of a bed of roses implies thorns, doesn’t it?), but we are all a lot calmer, happier, relaxed, and our focus has shifted to a more positive place.  The focus is on us…we are the thing that matters, and we are giving ourselves our due.

J has learned quite a bit in the past few months.  He has learned, for one, that this is home, and that he doesn’t like the idea of it not being home.  Packing of any sort (even if it’s just for storage) requires clarification: we’re not going anywhere, but we don’t need this right now.  His vocabulary has expanded to include the names of places he wants to go to, and we think this is a reflection of what variety he has available now.  J has, thankfully, broken out of some ruts, and -regrettably- has tried to plant himself firmly in others.  We have made a point of not becoming too attached to his structures, and we’ve discovered that -if we wait to make a suggestion while driving around- J is more amenable to breaking away from what he has firmly set his mind to (as in wanting to go to Farmers’ Market on a day when it was, inexplicably, closed).

Another thing we have noticed is that J’s enunciation has improved massively.  Those K, T, SH, CH sounds are coming out much more clearly.  He will never speak with the crispness of a Shakespearean actor, but he now makes sounds that used to be challenging.  On Sunday evening, for example, he went to his board, rummaged through his tray, and announced -quite clearly- that he wanted to go to Costco.  What used to sound like “cocoa” now sounded precisely like what J meant: he wanted to go to Costco.  This from the kid who used to say he wanted to go to “Sham’s” not that long ago; he is, we’ve noticed, a Costco convert…there wasn’t a Costco in Morgantown, but there is one here, and J has his own card…he is smiling on the photo…broadly.

Of course, the one downside of Dada going back to work is that J’s internal clock is entirely off-kilter.  This morning, it being Wednesday and pizza and Lego, he was up by 5 a.m., and has been trying to make the day go faster since then.  Thank goodness it is also paper-shredding day, and this has kept him occupied from time to time; that I was outside at six a.m. (it was forty-something degrees and I was in my nightgown and robe) feeding the fish in the pond because The Supervisor decided it was time to start micro-managing my task list is entirely beside the point.  Things are, in spite of these small quirks, a lot better now that we’re all more relaxed.

I think, quite honestly, that it’s the windows.  J can look outside from just about any room in the house (his bathroom, the half-bath downstairs and the laundry room being the exceptions), and he can step out on the patio if he is so inclined.  The only glitch there is the frantic bird activity (so many cardinals and chickadees!), and the fact that there is a cat (we don’t think she’s a stray because she has a collar) who spends the livelong day under a bush, and the nights under the grill’s vinyl cover.  We don’t feed her in spite of her friendliness because we are not looking for a cat (since the demise of one of ours, and the disappearance of the other…we assume some animal took her, or someone offered her fresh fish and a lifetime of not brushing her luscious mane), and because it doesn’t look to be hungry.  We are pretty sure she just wants to be friends, gain access to our home, and scratch all the furniture that survived our previous pets.  She is rather insistent, and we refer to her -tongues firmly planted in cheeks- as Elizabeth Warren.

J is not into this whole cat situation.  He’s having none of it.  When he finally saw her, happily running up to Dada as he fed the fish, he screamed as if he’d just seen an angry gollywoggle.  It took all my charm and patience to keep him from locking the cat (and Dada!) out on the patio.

But all is well in spite of these little things.  And we will catch up on our new routine and vary it as needed, and add more places J wants to go and use them for vocabulary (would you believe he knows how to say Cost Plus?  Doesn’t call it World Market…but he tells you he wants to go there…cookies…they have good cookies, and he likes their tableware…)  He is also happy because this is a recycling-friendly town, and people take their own bags to the store.  J will not allow us to leave the house without those reusable bags…

See?  Old normal is new again…familiar but interesting.  Comfortable but exciting…

Ye-ay us!