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!

The way we live now…inside and outside of the shell

This is Dada’s last week at his job here in WV, and J is trying to adjust to the new face of our everyday routine.  We worked on that this past Monday (Memorial Day) when Dada was at home.  Instead of treating it like a holiday, we inserted some of J’s regular Monday routine into the mix as well as some fun activities he doesn’t expect to be doing on a weekday.

It sort of worked.  I’m sure that next week will be “interesting” because it’s one thing to pull off a “Dada’s here from work” one day, and it’s harder when it’s a few days in a row without a trip planned.

I have grown used to the horse pills I have to take every night.  I don’t enjoy them, but they have yet to upset my stomach so I’m grateful for that.  Taking that much iron in one fell swoop is something I’d never had to do before, and I’m slowly starting to feel better, but the prospect of attracting the refrigerator magnets is daunting.  It’s nice to not look like death warmed over, but it’s also a revelation to see that not all my physical limitations are the result of galloping anemia.  I am, and this cannot be denied or reversed, definitely getting older, and it shows.  I am, however, also looking forward to having more energy (something the doctor tells me I will work up to as my body restores its iron reserves to a decent level).

J is doing well.  The Risperdal, of course, wreaks havoc on his weight, but that doesn’t stop him from exercising and trying to control the urge to eat us out of house and home.  In recent weeks we have accepted that we need to exchange certain menu items…pasta and pizza on the same day are a no-no, and J now put his pizza on the schedule, put away his pasta (he gets fourteen noodles for a lunch, people, it’s not like he gets an immense amount anyway) and has his yogurt and banana chips for breakfast.  I make him a salad…he eats it with what can be described as resignation, but he eats it.  Today (Pizza Day) is also Fish Day…  Very little impact on his waistline so far, but at least he’s learned to accept that he can’t have it all on the same day.

Now that the weather has improved (although we get rain most days) he is also going for walks.  Once Dada is home until his next job happens we have planned an after-breakfast walk, our mid-morning workout, trips to the pool, and -when weather allows- walks on the track at school.  Lunch will be the biggest meal of the day.  We will do more outside, and we will all get ready for the next stage of our life as a family.

We still don’t know for sure where we’re hanging our hats.  It looked like Atlanta, GA for a while, but the employment market there is extremely tricky.  Lots of jobs, but not a lot of feedback from potential employers.  The state of North Carolina, on the other hand, has surprised us…immediate replies to applications, unexpected calls regarding jobs we didn’t know were out there.  We are actually quite enthused about this prospect; Raleigh is where I lived with the kids (in my sister’s home) after I separated from the children’s father, and that is where Dada came to visit and proposed to me…eighteen years ago.  We’d be coming full circle, and it’s an area that we both find appealing.

With just a few days left for Dada at work, and the prospect of an out-of-state move within the next few weeks we are all getting a little antsy.  I look at the house and see things to pack, throw away, donate.  Dada looks at the house and sees a messy process.  J probably thinks “all my stuff is coming with us, right?”  He has realized that there is a great deal of change in the near future, and it has made his anxiety ebb and flow erratically, but we are working with him to help him cope.

One thing that has thrown him off completely…unexpected, unannounced visitors over the past weekend.  On Friday, as I opened the garage door to air out the space before J got on his elliptical, a truck pulled up and former aides from his school showed up for an impromptu visit.  To be honest, it took me a moment to recognize them…they were so out of context that I had to take a second look.  As they cleaned the classroom (one year later) J’s ceramics assignments and some CDs he had left behind turned up.  Of course, I had to tell J they were here…I couldn’t not let them say hi…it would have probably seemed suspicious to them…  J was thrown by the visitors, and he wanted them (although not in an aggressive or insistent manner) to leave.  I think he worried briefly that he would have to resume his old schedule, and -while it has taken him time and effort to become a man of leisure) to leave.

After they went he was relieved, but he kept going to the door to make sure no one else was showing up.

On Sunday, just as we were getting the last details of dinner ready to go, the doorbell rang.  This time it was a visitor for Dada.  We had run into this person the day before at the bookstore, and he was recognizable to J, but he was also inexplicably here…close to dinnertime.  J was, I must confess, very good about the whole thing.  His main thing was to go back to his schedule board and reiterate that the events, tasks, activities and ideas he had for Monday remained unchanged.  He did this about sixty times…in fifteen minutes.

We eventually found our center.  We eventually sat down to dinner.  And Monday happened in a pleasant way…

We’re getting the hang of it…again.  Another hang of another it…

A little up and a little down never killed anyone…

Our visit to the psych on Friday featured praise for J’s progress, suggestions regarding keeping him on the med for a whole year, and the possibility of on putting him on Metformin.  We don’t go back until July.

And then J decided to pepper our weekend with random moments of being obstreperous.  Such is life.

Dada had taken Monday and Tuesday off from work, and this caused J anxiety.  We went out of our way to clarify beyond any doubt that this was a “fun” time, and -regardless of how “un-fun” The Smurf movie was, we did our best to make sure J enjoyed those four days of Dada being home.


Menopause (or its vicinity) and Autism are not a good combo.  Sunday was Easter…Sunday was horrible.  I don’t know how Dada survived two extremely crabby human beings under one roof, but he survived.  J and I were both exhausted by the time we went to bed.

We managed in the end.  We had to reinforce the “fun” elements over and over, and remind J of the altered schedule, but we managed.

At one point during the weekend there was an epiphany, and our life is turned upside down (in a good way) because of it.  We actually, in hindsight, blame it on This Is Us.  If you haven’t watched this show, or if you do and are -like we were- savoring each episode and not bingeing (like one wants to do with the conclusion of each episode,) I won’t spoil it for you.  If you have watched the show, I’ll just blame it on William…you know what I mean.

Anyway…on Saturday morning, while we were getting dressed to take J to the inevitable Smurf movie, Dada just looked up and said he was done with his job, and -if it was ok with me- he was putting in his notice.

The only difficult part of saying “yes, a thousand times yes” was that I wasn’t fully dressed (I was trying to put on a skirt that I can never quite find the button on the waistband, and I had one foot up on the bed because I was (and this is dangerous at any age, but more so at ours) trying to put an espadrille on at the same time…

Once I regained my balance, I hopped on the bed (yet another precarious arrangement) and said a rather enthusiastic yes.  If I tell you that my husband suddenly looked a lot younger, a lot less stressed, and massive relieved you have to take my word for it…we are not “let me capture this moment for Instagram” people.

No, that didn’t really contribute to J’s anxiety…at least not completely.  I think he was more thrown off by the usual “you’re taking me to the doctor, right?  He’s only here when I’m going to the doctor…so that has to be it…come on, guys, I feel FINE!!!!  YOU!  The man with the goatee and the Subaru…go away…go to work…I don’t need to go anywhere where they will poke me, jab me, make me say AAAAH.”

This was, in part, a factor in Dada realizing just how immersed in work and work-related worries he has been.  J only associates Dada being here with going to the doctor, going shopping, or a weekend (which usually means shopping or errands.)  Dada used to be a person who took him for walks, who watched movies with him…Dada has become the person with the work ID around his neck, and being here on a weekday means “doctor.”

I know this is an extreme interpretation on J’s part.  I know Dada does more than that, but J has processed it that way, and it has had an effect.  We worked, quite assiduously, at reframing that image these past few days.  By the time J woke up yesterday, found Dada was not here, and started his regular routine, there was a different vibe.  We did our usual stuff, but Dada was missed…

On Tuesday I told Dada to take over Wednesday’s Lego…he and J sat down while I cooked dinner, and put it together. A day early (routine flies out window…film at eleven) and in a different room in the house (dining room,) but J was happy and relaxed, and he enjoyed the presence of the person he had come to identify as the family “ambulance.”

If J realized that Dada isn’t just here to hop in the car with us and take a vacation (always too brief, and always hectic,) or to take us to an appointment, or meet us at a doctor’s office, or simply to go to Target, Five Guys, Barnes and Noble, Kroger, Michael’s…Dada realized that he has spent way too much time working when he could have been here.

Mind you: the man will get a job, and he will have responsibilities and obligations, and a steady income…but…

Our plans to scale back, reframe, rethink, reassess are in full swing.  We are not disappointed by the lessons learned.  Yes, it is easy to take for granted certain things…that is clear.  Yes, work is important and necessary…but family comes first.  Always first.

We are doing our inventory, setting wheels in motion, creating a timeframe, organizing our materials, and setting this project in motion.  And it feels good.  My husband’s early morning sneezing attacks that would happen only on workdays, and which I would joke were an allergic reaction to his stressful work situation have, surprise surprise, ceased…he hasn’t sneezed once while getting ready to go to work in the morning.  Maybe they’ll start up again tomorrow…maybe…maybe they were just his way of letting out that he wasn’t happy with his job.

We face a new adventure.  We are, actually, quite thrilled and freaked out, and excited and hyper about this…  Our eight year-old selves are building a raft, stealing a sheet to make a sail, and gathering provisions…  Our fifty-something year-old selves are letting them take over while we do the grown-up stuff.

This is all bound to be chaotic, hectic, complicated, scary, exhilarating.

And away we go…

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…




A fast-moving slow-motion life

Winter has slowly turned to something like spring, and the central heating is turned off for good (unless some freak alteration of the local weather conditions forces us to reevaluate the situation.)  The balconies off the kitchen and master bedroom have been “set to rights,” and we can now (if we are so inclined) sit out there to read when the weather cooperates.  The backyard will be getting a good cleaning in the coming days, but it will not get prepped for a garden.  If we are leaving this area (and we wholeheartedly hope this happens in the shorter term rather than in the longer,) we don’t want to have anything more than lettuce and herbs to deal with as we pack and organize for a move.

Just like that, in the blink of an eye, it has been a month since J’s dental surgery.  He is fully recovered, and as interested in whatever we serve him as ever.  His stubbornness has caused one semi-tantrum that we quickly dissipated by telling him to TELL US what he wanted.  Amazing what a willingness to communicate will do for the atmosphere and interaction in a household…

We have re-established a routine that J finds more appealing to him.  He takes care of laying out Dada’s clothes for work from Sunday to Thursday, and we have pushed back lunch, snack, bath, and dinner.  It seems to work better.  The days don’t seem as long and dull now that the sun is out for longer hours.  And Wednesdays, yes, are Lego Day.  J has chosen to alternate his workouts, and one day he does his elliptical (this week he discovered Fiddler on the Roof...he sounds very joyful as it plays…of course: he only gets to the part where Tzeitel and Motel get Tevye’s permission to marry.  That in itself is a pretty good workout, and he seems happy and energized when he’s done.

We are very glad he’s still exercising, and still enthused about it; we don’t know how much it’s working, but between his better choices about food, and the fact that he does concerted physical activity on a daily basis his weight seems to have leveled off.  The med, however, will always play a part in that issue, and we have to stick to it until J has, once more, “leveled off” in his behavioral issues.

Life is slow around here, but it is still hectic.  We are up early, and we do a lot of things during the day.  There are always chores to do, things to accomplish, tasks that crop up unexpectedly.  It seems like we finish one thing, promise ourselves a quick break, and then it’s time to start the next thing.  By the time J’s bath rolls around on the schedule we are reeling from so much activity.  It helps him, and it exhausts me…but that’s the nature of our life.  We deal with it as it comes, and (we hope) we will find a new groove wherever we end up after this decision to, once more, relocate.

In other news: we have joined the new millennium.  Yes, we know we’re behind by a long stretch.  Call this Day Three of Owning an iPhone.  Add to that: Day Three of the iPhones Being in a Closet, Turned Off.  Yes, we are THOSE weirdos.  Our cell phone service provider (it’s a pay-as-you-go, people) had a sale on iPhone 5S, and I bought two…one for Dada, and one for me.  They are set up.  They have minutes.  They are synced to our Cloud and our iTunes, and so on and so forth.  Dada turns his on when he gets in the car to leave for work, and turns it off when he gets there…same thing for the trip home.  Mine is in the closet until we decide to leave the house.  Why, you may ask yourself, did I even bother?  PROLOQUO!!!!  It’s now on the iPhone, and -should J not have his iPad on him because we’re just walking to the mailbox, or going for a short mosey around the neighborhood- we can still communicate.

Never you mind that it took us ten minutes to figure out how to open the case that I ordered to protect Dada’s iPhone (he IS accident prone,) or that we do a lot of squinting as we look at the screen.  Never you mind that we still tell people to call the house first…we now have a very portable Proloquo in case J and I go somewhere and the iPad stays home.  That’s all we cared about, really.

People don’t get this.  People think our lack of attachment to the television, the cell phone and the general hustle and bustle of life is odd.  We look at houses as repositories of life, books, family, not as a place where we want to add the demands of someone else’s idea of what our lifestyle should be.  “That wall…covered with bookcases!”  “That would be a great hangout for J!”  “Can you imagine sitting there to read on a nice afternoon?”  “I have one word for you: CHICKENS!  We can get a chicken coop!!!!”  “I can almost hear music playing in the background while we cook in that kitchen!!!”  Not once do we say “that’s a nice spot for a TV,” or “I wonder if we’d get good cell phone reception in that area…”  We measure distances by grocery stores, J’s favorite locations to visit, bookstores…

We don’t really know if this is a practical pace to set, or try to sustain.  We just know it’s OUR pace.  We have realized that we are not suited for too much of a rat race, or -perhaps- that we have lost our taste for trying to keep up.  The more we slow down, the more J seems to like the way things are.

So…there is a hectic quality to life (when you get older and you realize that you’ve less time ahead than behind you something happens to you…don’t ask me to explain) around these parts, but there’s also that desire to not give in to the demands of everyone else’s idea of what life is, or what it should be.

The med is working.  The communication resources and efforts are working.  The shutting out the madness of the world?  Sometimes yes, and sometimes no.  We’ll figure something else out, and we will put some elbow grease into it…now that we’ve decided what we DON’T want it’s a lot easier.

And so…another Lego for the town…it’s getting crowded there, and we need to find wider horizons…ain’t that always the way?




Once more…snow…

We woke up to a winter wonderland.  Of course, it still is winter, and we keep forgetting this, mostly because we want it to be over.  An 80-degree day in February gave us a false sense of spring, and now we sit here looking at the snow accumulating on everything our eye can spy outside.

J was up very early.  Up and raring to go.  I think he (and I know this is weird) heard the snow and thought it was best to just make sure Dada was going to work anyway.  School was cancelled, but there is Dada, sitting in his office, hoping the road is properly cleared by evening.

J and I have done all the chores already.  We had them done by 8 in the morning.  That isn’t, regardless of how early it seems, a record.  We’ve actually (on other winter mornings) had our chores done by 7:00 or 7:30.  He is now working on a puzzle while listening to music, and I am trying to catch up with everything I’ve put aside because I keep getting distracted by everyday life.

The lip has healed.  It is beautiful.  There will be a small scar that will show it was once a small wound, but it will not mar the beauty of J’s smile.  Interestingly enough, J’s little lip scar is on exactly the same spot where I have one from a cataclysmic fall when I was three years old.  Mine required emergency plastic surgery, and I was very self-conscious about it growing up…J is just now fonder of lip balm than he used to be…he wants that sucker to gleam when you look at it.

Yes, things are busy here.  We are working on our spring cleaning little by little.  We have realized how big this townhouse is, and how ready we are for less.  Is that odd?  Our nest will never be empty, but we do want a smaller one nonetheless.  It’s not just the cleaning and the keeping things in order; we have become less charmed by the idea of more of anything other than time to be together, enjoying the little things that make us feel happy and peaceful.  This is not, of course, a life without problems, but rather a life without added bells and whistles that make the problems more overwhelming.

We also think that J is ready for a change.  He doesn’t really enjoy this weather.  I think the greatest advantage he sees in not having to go to school is that he doesn’t have to brave the slippery surfaces from here to the bus and back.  He also doesn’t mind not having to bundle up in sixty layers on a daily basis.  Going out to appointments or for fun is one thing; the layers are manageable then…but day in and day out it becomes a huge encumbrance, and J really doesn’t miss it.  I can’t say I blame him.

There are, however, little things that we keep discovering about each other, about J, and about ourselves.  J, for example, will always obsess about the weirdest things, but it makes sense to him and, when we put ourselves in his shoes, it makes sense for us, too.  J has come to realize that we, too, obsess over the weirdest things, and he has grown to accept these quirks.  He doesn’t always agree with, or understand, them, but he accepts them.  Negotiation between us has become easier, sort of, because we are more willing to understand the little things.  A hand extends to help me off the floor; more patience is exercised because an obsessive behavior needs to be expended.  Stopping in the middle of putting a Lego together because someone’s eyes are tired becomes easier; pausing to listen to instructions even though we really are in a hurry to be done so we can go back to whatever animated movie we are watching repeatedly becomes less grating.  Waking someone up more gently because a timer has gone off and we realize it’s bedtime but old people have taken a shortcut to that particular daily milestone is a recurring act of kindness.  Accepting a shorter timer because some people are more eager to end the day than others is no longer a Greek tragedy with chorus and all…

If we can translate all this into a way of living that stretches out for the next five to ten years we will feel like it’s an embarrassment of riches.  The moments when our lens refocuses and we are more realistic we get a little down in the mouth.  If this is not easy in our fifties, what will it be like in our sixties?  J is a young man now, but by then he, too, will have crossed another decade threshold, and there will be moments when we won’t be equipped to deal with what he requires from us.

We think about this more and more.  We worry about it.  We don’t agonize, but we do hear the wheels and gears clicking away relentlessly.  And so we plan on things being smaller, more manageable, more apropos to being able for a little while longer…

And it’s snowing, and it’s almost springtime, and time clicks clicks clicks…back to lists and plans, and culling and trimming.  Tomorrow, inevitably, is another day, and we have Legos to build because a Christmas village needs new buildings even when it’s no longer Christmas.  Yes, it grows out, and over, and around…  And while we can we will keep up.  It’s what we do.  It’s our concession to J’s idea of fun.  Pauses and all, it works for the three of us.

Until it no longer does, we will plug away at accommodating each other, at understanding, at adjusting.  Less spaces to clean, and rooms to organize will be nice.  Less disruptions that we are not prepared for will be convenient.  Is it possible?  We’re working on it…


I’m with the band(aids)

The lovely people at MFSACO have given me a discount.  I think they know we’re in this for the long haul, or they think I run a small clinic in a small town.  Either way, I intend to use that $5 discount for more bandaids…even though the frequency of use has diminished significantly over the past two weeks.  We are down to, drumroll, TWO packages of bandaids a day.  That is down to two from, oh, six? seven? a day…  Progress.

The bump on J’s head is getting smaller, too.  Slowly, of course, because he still hits his head though not as violently as before.  It can still be pretty bad, but nowhere near as horrible as before.  J now seems to be able to slow himself down, and when I point to the NO HITTING signs in his bedroom, bathroom and the kitchen, he is more aware of what I’m trying to tell him.  He has, once more, started apologizing when he realizes that he’s upset me…even if I keep a calm exterior.  Progress.

He gets up early, and he gets his bandaids from the closet.  He starts the process of changing them out, and we hear no SIB, no fretting, no whimpering or yelping.  He knows we know he’s up, and he waits because by now he’s sure one of us will come to his aid.  He is patient when we do this.  He no longer takes any delay (caused by older eyes that cannot see as well as they used to, or poor lighting that that doesn’t help matters, or the fact that we’ve just woken up and haven’t had coffee) as an excuse to go off into a self-harmful tirade.  Progress.

Still, it is a process, and we’re working our way through it.  There are ups and downs, and side-to-sides…  We have running-in-place moments, but we make progress nonetheless. Progress is inevitable, even if it’s not in the shape or form that you wish it to be; regress is also inevitable, and we deal with that by circumventing the old way and reframing a new one.

The fact that we’re seeing more enthusiasm and involvement on J’s part is good.  We can now call him to help with dinner and not be met with resistance.  We can ask him for a walk, or company, and he’s not annoyed by our request. From time to time his tolerance for our company, presence, or desire for interaction is lower, but we understand that…it’s, we suppose, normal for a 21 year-old regardless of his other issues, to not want to be attached to mom and dad all the time.  By the same token, it is also normal for mom and dad to not be perpetually in a frame of mind that is all about “the kid.”

The weather isn’t being kind today either.  It’s moody.  We are, once more, not working on decorating the outside of our townhouse for Christmas on this dreary day, but we have lined everything up for when it’s the right time.  In the meantime, the Christmas tree forest grows.  Seeing the evolution of his TV room into some sort of mini Winter Wonderland has inspired J to tidy everything up.  He did a thorough job of vacuuming, and we shifted the cushions on his couch and tucked the slipcover into place properly.

A couple of Christmases ago J went on an outing with his aides at school, and he brought home a Disney Fairies pillow from the Dollar Store.  I was surprised…not because it was  Disney Fairies pillow, but because -until that moment- I was unaware that Tinkerbell has a social circle outside of Peter Pan and the Lost Boys, but goes to show how the world still spins when I’m not paying attention.  This pillow is J’s pride and joy.  By that I mean that he has it in pride of place on his TV room couch, and he sits on it.  (Whatever notions of Monty Python‘s Sit On My Face are being worked into that image, I seriously doubt that it has crossed J’s mind.  The only Monty Python song he frequently plays on his iTunes is Always Look On the Bright Side of Life…a more fitting anthem to the goings-on around here, I would say.)

We had noticed that the Disney Fairies pillow was looking deflated.  (I’m being generous…it looked as flat as a pancake at times, and lumpy as bad gravy at others.)  In the spirit of Holiday Preparation, I disassembled it today, removed the original filling, and replaced it with an old pillow.  Yes, I had an old pillow handy.  And by old pillow I mean “a pillow that briefly met with J’s approval, but soon fell out of favor for sleeping purposes due to reasons unknown to us but logical enough for J to warrant parking outside his door as a result of irreversible banishment from his bedroom.”  I don’t toss these things.  If it cost more than five dollars and didn’t come from the back-to-school or your-relatives-are-descending-on-you-for-Thanksgiving sale, I keep these pillows packed in plastic.  Yes, I have a lot of pillows.  When a heavy-use pillow kicks the bucket (or when someone has the flu or a bad stomach bug) I replace it with a pillow from the Pillow Bounty.  Today I dissected the Tinkerbell and her Girl Squad pillow, and replaced the contents with a clean, newish, serviceable pillow from that stash.  J, feigning ennui and failing miserably, received the pillow once it was done. He kicked me out of the room (after I insisted on being shown some measly amount of gratitude,) and I could hear him giggling as he, once more, unceremoniously went back to the job of flattening the pillow over the course of a couple of years.  (No worries, as I mentioned, we’re covered for refills.)

We make progress.  Of sorts.  We will, at one point or another, stop hitting walls as frequently as we have been, and -on the plus side- that has already started to happen.  The walls are a little farther from each other, and we are learning the way and understanding the fine art of anticipating tight corners.  Progress.  On all fronts…and backs…and maybe on the sides, too…