We go on a family vacation…

Spoiler alert: we survive.

On a sunny Saturday morning, and after lengthy and detailed preparations that would qualify me to participate in organizing D-Day (if I’d had a past life,) we hopped in our car and drove east to D.C.

J packed enough stuff to stay a month.  He wore all of it.  His suitcase was heavier and better equipped than any other suitcase I’ve ever seen.  At some point during his childhood he must’ve heard me say “always pack more underwear than you think you’ll need” because he only left enough underwear at home to use while his post-vacation laundry was being done.

This was the very first time we took a trip without TGG.  We were cautiously optimistic about how this might turn out, but we were also ready to graciously accept defeat and head home early.  A Saturday-to-Wednesday didn’t seem significant when we originally planned it, but once we got to our hotel we started wondering if we’d bitten off more than we should chew.  Notice I didn’t say “could.”

We timed our drive in such a way that we arrived at the hotel shortly after check-in time.  We suspect that his hotel has only one set of adjoining rooms because we got the same ones we were in the last time.  This is not a bad thing because J was familiar with the set up, and even looked around as if to say “ah, yes…MY room.”

It seems that we are the bringers of heat waves.  Our trip last year was in June, and it was pretty toasty.  Our first day this time around was very much in the same vein.  We have decided that we will plan for either earlier or later in the year the next time around.  Maybe that way we will have cooler weather, or we will bring a much needed spike in temperatures to the area.

We walked all over D.C.  J was so happy to be out and about!  Of course, I took both iPads, and I bought him a set of headphones that worked a charm.  September is a lot less crowded, and we managed to experience things that we had to skip last time.  Last year J had problems with the crowds at the Smithsonian Air and Space Museum, but this year we walked around the Smithsonian American History Museum and the National Portrait Gallery.  I made sure that one of the iPads was fully charged up when we left the hotel, and then I’d swap it for the other one as it reached 10%  charge.  This allowed us to be out for hours, and J could drown out the noises that tend to cause him anxiety.

We had Sunday brunch at the very crowded but very much worth your while Founding Farmers.  We had a reservation for ten a.m. and, should you want to go there, get a reservation because the lines can be long, and the wait can be exhausting.  After a hearty meal, we set out towards the National Mall, and ended up circling around the Tidal Basin and sitting for a while at the Jefferson Memorial.  There is a very friendly squirrel there.  This, and birds, were the only living creatures that gave J pause.  The first day he was a little overwhelmed by the birds, but by the second day he was much better.  I don’t know if he just thought to himself that they were as much a part of the environment as the buildings and people.

On Monday we made our way to Dupont Circle and explored a couple of bookstores that we had been hoping to visit last year.  J had fun walking around.  He also liked eating a mid-morning snack at Panas, a small place where they make delicious Argentinian empanadas. Tuesday was museum day, and J was relaxed and happy in spite of the seeming not-very-J theme of the day’s schedule.

I will now take a short moment to tell you about the one fly in our ointment.  We took him to dinner too early on Saturday.  I had mistakenly thought he was more tired than hungry so we went for tapas at a fairly early hour.  In the middle of the night he was grumpy and disruptive, and we had to get out of our bed to deal with his anger.  He went through several packages of bandaids, and he was complaining in spite of the snacks I gave him.

At around four in the morning I had to sit him down and tell him “these are all the bandaids you have left.  If you use them all up, we will have to go home because I didn’t come here to buy you bandaids.  When we get up, we will go to breakfast.  If you want to go home then, fine…it would be nice, though, if you told us why you’re unhappy so we can help you.”  Dear reader, that was the end of the bandaids issue.  If I tell you that we came home with the packages of bandaids I showed him in those early morning hours, would you believe me?  You should.  He didn’t ask for any again.  After this incident, J was very communicative about his needs and wants, and we ended up being thoroughly impressed with his behavior.

Now, the other thing I want to tell you about: we are SO GLAD we have made a habit of setting the table each evening and eating together!  We took J to several very nice restaurants, and it was wonderful to see how well he navigated the sea of glasses, cutlery, trays with bread, etc.  I know it sounds snobbish, but we wanted to take him somewhere nice so he would see that all the effort he puts here pays off.  We took him to dine at a lovely restaurant called Casa Luca.  We made an early reservation and it was wonderful!  J ordered the gnocchi, ate his bread after dipping it in olive oil, tried the prosciutto…  We then walked back to the hotel.  It was awesome!

For lunch on Tuesday we went to Rosa Mexicano, and he loved it!  The tapas at Jaleo were out of this world, and they had his favorite sausage: chistorra.  If you’ve never had chistorra and you see it somewhere, try it.   Dip it in something sweet like honey…J highly recommends it.  We made sure we took him to places that might be crowded and noisy, and the headphones did the trick.  We didn’t do this out of meanness; we simply wanted to show him that we cannot always go somewhere where he will have the absolutely perfect conditions.  He adjusted very well.

We drove home on Wednesday and, after a one-hour delay in very slow traffic on the interstate, we made it back with plenty of time for J’s sitter to come see him.  We had her over for dinner and he was very happy to start swinging back into his routine.  The rest of the time until today has been dedicated to settling back into the everyday drudgery that is our life.  He has been happy.

So that’s the recap of the Great Family Vacation of 2016.  We hope to repeat it next year.  We know now that J will happily go along with plans as long as we address the issues that can cause him anxiety.  I cannot get rid of birds, but I can make small adjustments that will make him feel comfortable, and help him realize we care and are trying to help him.

On to other news and comments tomorrow.  For today I’m basking in the glow of a successful trip with our son.  🙂

 

A trip to town…

With a great deal of equanimity, J accepted that we were going on an outing, and he trusted me when I said it was for fun.  What I mean by “for fun” is “no doctors.”  We ran errands.  We walked a lot.  We rode the bus and discovered that it isn’t just the potholes that cause problems; poor suspension in any vehicle will make for a bumpy ride even if the road is (more or less) in good repair.  By the time we reached High Street, J and I were more than ready to get off the bus; I’m sure the other passengers were ready for us to leave, too, because J said GOING TO TOWN a minimum of 200 times during the half-hour ride.

Our first stop was the courthouse.  Because the world we live in has become increasingly threatening and violent, we had to go through metal detectors and empty our pockets before going in to complete the errands we had for the morning.  J had been to this building before, and he was a little taken aback by the new contraptions standing between him and getting in and out of there quickly.  A brief moment of confusion, a relinquishing of his beloved Slinky and kind patience from the security team at the door, but we made it through without problems.

Of course, I had a minor glitch with the paperwork, and we had to do two of the things we had on our list, but leave and return for the third.  J was patient about this, too.  There were a lot of people waiting their turn, and he navigated this fairly well.  I say fairly well because J takes up a lot of space when he sits down, and I had to ask him to “gather his feet” so as not to create an unnecessary obstacle course for the other patrons.

I had promised J we’d go to his favorite store in town when we were done with our errands, but I had to dash to the library to try printing a piece of paper I needed for that pesky third errand.  When I realized the printers weren’t working, I let J walk the Children’s section and I texted back and forth with Dada trying to find a solution.  The proceedings reached a stalemate and, to recover from the stress of the moment, I told J we were going to the toy store.  THIS was the moment he’d been waiting for, and he was so happy that it was well worth having sat down and taken that deep breath.

We walked around the store, looking at dolls, games, plush toys, books, Playmobil sets.  I asked J if there was anything he wanted before we left.  Another turn around the store helped him make his choice: the biggest set he could possibly choose from among the Playmobils, and the little motor to power it!  I explained that, yes, he could buy it, but HE had to carry it around town.  As we were paying, the store owner (we have known her since we moved into town four years ago) helped me figure out how to complete my final errand.  Immense Playmobil set in hand, we went back to the courthouse (and through security, of course) and finalized our official business.

I asked J where he wanted to have lunch, and he stood looking around at the different store fronts.  In the end, he opted to go to a diner that he’s been to when he’s walked into town from school.  I had never been so he guided me to it, and when we were led to our table, he plopped down like a regular customer.  Since it was after eleven a.m. I ordered French Toast and J ordered a grilled cheese sandwich and some chicken strips.  He ordered his food with his Proloquo.

I can understand why J likes the place.  The booths are spacious, and the music was perfectly in tune with J’s tastes.  As we sat there waiting for our meal, J was happily moving around in his seat, following the songs they were playing.  He was so happy, in fact, that he didn’t hesitate to remove his brace to cut up the chicken strips, and didn’t complain when I reminded him that he has full use of his thumb and I expect him to move, curl, wriggle, and command it.

We counted the money to pay our bill, and made a pit stop before heading home.  Dada kindly drove into town and brought us home.  All in all, we were out and about since 9 in the morning, and didn’t walk into our townhouse until shortly after 1 P.M.  It was a very full and active morning, and J was stretching and yawning when we got back.

We spent the better part of the afternoon putting his toy together.  The nice thing about Playmobils is that they’re easy (for me) to figure out.  I’ve grown too old for Legos.  And before you argue that “you can never be too old for Legos” I will explain that I fully agree with the spirit of that, but my eyes aren’t what they used to be, and some of those tiny pieces are hard to handle with my arthritic fingers.  J was especially thrilled when he realized that one of the figures in his new Playmobil Ferris Wheel set looks a lot like him, down to the newsboy cap it’s wearing.

As you can tell, our trip to town was mostly successful.  The one glitch was the red-tape, but we figured out what to do to properly and promptly complete our errands.  I didn’t flat-out lie to J; I meant for him to have fun, but I also meant to get things done, and we managed both.  The rest of the weekend went well because we set the proper tone for errands and fun.

Today is the first day of the two school-less weeks in August.  We are doing a little work, and we are trying to do some fun activities.  The mood is light, and we are determined to sail through the next couple of weeks without too much drama.  And the brace?  It comes off for chores and meals, and I keep reminding J that his thumb works just fine.

Don’t let the smell of regression intimidate you…

First it was “pull my sleeve down and cover my hand.”  I said NO and rearranged his shirt so it was resting properly and squarely on his shoulders.

A few hours later, a smiling, happy J came into the living room with a boxing glove in his hand.  He asked me to put it on him.  Same hand that he wanted covered with his sleeve.

I said NO in the same tone used when saying “silly rabbit, Trix are for kids!!!!”  He smiled and, slowly, made his way back to the third floor to put the glove in his room.

I decided the tack I will take is to keep his hands busy because idle hands and all that good stuff…

It’s still eleven days to ESY.  I think he’s bored.  I think he wants attention.  I am confused because he constantly kicks me out of his presence.  I am willing to try anything; whether it’s leaving him alone, checking on him every five minutes, taking walks when he least expects it, doing crafts, just sitting there…  I’ll try it.

I am aware that he is 20 years old.  I understand that he is not operating on the same system as I am.  I understand -especially after seeing Inside Out..go see it…it’s a must- that the little Mindy Kaling in him is probably taking over the control panel.  I’m even ok with his inner Lewis Black putting in an appearance.  I get the whole thing about a new improved, more complex control panel.  I understand that regression is normal.  I understand that unhappiness in small doses can be a good thing.  I understand that he cannot always do what I wish he would do.

Tomorrow we go to the psych for the first time in six months.  I was hoping to wave goodbye to the Risperdal, but now I’m not so sure…  To paraphrase Sheldon Cooper’s thoughts on gravity: Autism, thou art a heartless bitch!

Tomorrow is, as Scarlett O’Hara said, another day…

Live…travel…and learn…

We are back from our trip to D.C.  We are in one piece.  We are satisfied with the results of our journey.  This shouldn’t be construed as “it all went smoothly.”  First and foremost: J had fun. Second: we had fun.  Third: animals are not J’s thing.  I’ll get to the rest of that in a moment.  For our first family vacation in thirteen years, we did pretty darned well.

The kid who two years ago would eat only Ramen noodles and mac and cheese tried every single food item we ordered at restaurants.  He ate guacamole without picking out the “interesting” bits that he could see in it.  He ate his tacos as they were served: with lettuce and chopped up onions and chilies in them.  There was no turning down a meal, or a taste of someone else’s.  He tasted everything we offered him, and he ate all meals with gusto.

D.C. is a walking town.  None of us had ever been so we were going by the impression we got from maps.  Google Maps can be very alarming when you look at it…the distances, well, seem much longer than they really are.  Once I figured out that D.C. city blocks are not NY city blocks, all was well.  In no time we were navigating like pros…or as close to “like pros” as one can be on the first visit to anywhere.

Of course, quiet places to eat a meal (especially during tourist season) are few and far between.  We had two dinners that were overwhelmingly noisy, but J managed to focus on the purpose of our presence in the restaurants, and didn’t fret about the ridiculously loud noise levels.  Kudos to him.  We were pleasantly surprised!  The kid who wouldn’t sit through a meal in a restaurant a couple of years ago is now totally fine with having dinner at a crowded restaurant while Happy Hour is in full swing, or a loud group of diners is boisterously celebrating someone’s birthday nearby.

J loved the walking bits of our trip.  J loved the Metro.  Any hesitation we might have had about his willingness to descend into the subterranean landscape of a subway station were quickly assuaged.  In mere minutes we were surfacing at the Smithsonian station and trying to get our bearings.  First stop: Museum of Natural History.

And herein rears its ugly head the fly in our ointment…

The first look at the elephant in the Rotunda was enough to tell me we’d have to pick our battles in this particular location.  J was so impressed with the lifelike appearance of this particular pachyderm that he started backing away.  I took him aside and explained that the animals are not alive…  J’s shoulders relaxed slightly, and I started leading him towards the Mammals exhibit.

Out of the corner of my eye I saw the feline that looks ready to pounce from above, and that’s when I realized J was digging his heels into the ground.  Nothing doing.  It was over right then and there even though I explained (over and over) that the animals were not alive.  I motioned for Dada and TGG to go ahead and walk around at their leisure while J and I did the best we could to look at things from strategic spots that kept him away from the actual exhibit.  We saw a lot of animal butts, and that was perfectly fine with me.  I was unwilling to force the issue if it meant J would be upset.  Mentally I scratched the Zoo off our list because, well, if dead animals are a problem, what will live ones do????

A leisurely walk around the butterfly garden outside of the museum helped J’s mood, and once more we plunged into the heat of the day to cross over to the Air and Space Museum.  We fared a little better there because it was cool, and because nothing looked like it was about to kill any living creatures.  J walked around at his own pace, navigating through the crowds that were desperately trying to beat the heat in of doors.  Dada is an “anything that flies” aficionado so he and TGG walked around going ooooh and aaaah while J and I slowly moseyed around and took short sit-down breaks on any available benches.

And then it happened.  The thing that hadn’t happened in such a long time happened.  Gloriously, obviously, publicly, shockingly, stunningly, sadly happened.  Ferdinand the Bull sat on that bee…J had a meltdown.  The crowds and the temperature and humidity that soared finally got to him.  Not only did J hit his head with his fists…he ROARED!  Leaving TGG behind, Dada and I escorted him out of the premises and to a shady area outside of the museum.  We texted TGG our location, and we tried to reason with a very overwhelmed J.  I asked what was wrong.  He roared again.  I told him that was rude.  He squealed.  I checked to see if something was hurting.  Everything was fine.  TGG found us and we briskly walked to the Metro station (in the wrong direction for a good fifteen minutes) while J kept saying GOOD MORNING and ANGRY and I kept telling him “it’s afternoon, and it doesn’t feel so good right now,” and “yes, of course I’m angry.”

Suddenly, for the first time in a long time, we were “those people” who dash out of a place because their autistic son is going ballistic.  I was mortified.  Yes, this was my first thought: we were doing SO WELL.  And then we became “those people” who stop for a brief conversation in the shade of a tree, and I’m the only one who’s talking while everyone’s trying to interrupt me: a) TGG had to make it about him and how he had freaked out because he couldn’t find us, b) Dada was too flustered and holding the map wrong, and c) J needs to use his iPad to tell me what he wants, needs, feels, or I can’t help!

By the end of those three minutes when we looked like the The Three Stooges (with yours truly playing Mo to the hilt,) we knew where the Metro station was and we turned in its direction.  I was having a hot flash on top of the anxiety of seeing J THAT upset.  As Dada purchased tickets for our return trip, an arm snaked around my shoulder and pulled me.  J was hugging me…squeeze-release-squeeze hugging while stroking my hair and saying ANGRY.  Shit.  I couldn’t be angry anymore.  I told him, as he kept squeezing me, that he needs to say what he wants, and I will do what he needs.

And then I realized it: J was hungry and thirsty.  That’s what it boiled down to…we had lost track of time and he needed sustenance.  We were entirely to blame for the meltdown at the museum.  What morons!!!!!

The rest of the trip was uneventful.  We made adjustments to our sightseeing, our meals, and the way we handled J’s needs.  We learned a lot from this particular experience.  Remember, please, that we hadn’t traveled for leisure in thirteen years, and J was only seven when we last took a family vacation.  Things have changed a bit since then.

We hope to do it again next year.  We don’t know if we’re yet ready to fly anywhere, or how long we’d be able to stay if we go somewhere that requires a plane trip or two.  We’re learning again.  We’re opening a new book and seeing what’s in it, and we’re editing and correcting as we go along. We are willing to do this because we think it’s important that we keep learning.  J is obviously trying to figure things out…we’re doing this together.

Next time will be easier…

Lessons learned:

1)  There’s no such thing as packing too many snacks.  Hotel rooms have refrigerators…use them!

2)  If the only animals J feels comfortable with are the TOOB kind, stick to those.

3)  J will happily walk back from dinner with one of us while the other two go to do/see something that appeals to them.

4)  Two craft kits for four nights?  Are you nuts????  Next time take more books and more crafts.  If J wants to go back to the room, he will appreciate this.

5)  J doesn’t watch Cartoon Network, Nickelodeon OR Disney.  Use his Netflix or keep his favorite movies in his iCloud.

6)  U.S. History is too abstract for J so find other things to engage him.  Mix the familiar with the tourist-y and you’ll be fine.

7)  The Sofitel at Lafayette Square is an awesome hotel, and they will give you adjoining rooms if available.

8)  Oyamel, Mio, GCDC, Black Iron Pizza are great places for J to eat.  Service is great, food is delicious.

9)  Road trips are fine, but we really need to think long and hard about the possibility of air travel…hmmmmmmmmm

School’s out for summer…one year to “school’s out forever.”

The big calendar I prepared to map out the summer months goes a long way to getting J ready for school to be out.  That last week is always a lulu if he doesn’t yet quite grasp that we’re in the last few days of “going on the yellow bus.”  His first encounter with the calendar is always tricky, but once he realizes that summer school looms ahead like a promise, he’s fine.

The D.C. landmarks are something he hasn’t yet figured out, but tonight we’re having a family meeting to lay out our plan for this trip.  I have learned all the necessary sign language (TRIP, HOTEL, VACATION, and so on) to help us along the way, and I think it will all be fine once we sit with the map and make sure J understands we’re not MOVING…we’re just TRAVELING.

This is one of our problems: we seldom take vacations, and we’ve only really traveled for total, utter leisure ONCE.  Every other road trip we’ve undertaken has involved some sort of “event.”  We move; we drive somewhere to see a university and then we move there; we drive somewhere for a job interview, and then we don’t move there.  We’ve only just taken ONE totally leisurely trip in our entire life as a family.  We went to San Francisco in 2002, and J LOVED it!  J’s totally a “let’s walk around this town” sort of person, and when we returned (for a job interview/let’s pretend we’re just having fun) two years later, J was even more pumped about it.  Since then, we’ve had moving trucks and many miles to cover, and the madness that ensues with relocation regardless of how carefully laid-out our plans are.  So…there’s no blaming J for eyeing the calendar with wariness when he sees a picture of our car, and several days of a town that doesn’t look like this one.

There will be several more changes to the PECS board before we leave.  We will be meeting my niece, nephew and his wife for dinner our first night there.  I have not seen my niece since 1989, and I haven’t seen my nephew since, possibly, 1990.  TGG has met them several times before, but Dada and I haven’t seen them for a very long time, and J has never met them.  I am hoping this goes well…

The biggest change to our PECS board, though, is the appearance of J’s nephew.  TGG has mended fences (there WAS some maternal interference and I’m not ashamed to admit that I’d been chomping at the bit to get in there) with his baby’s mother, and we now have a good relationship with our non-traditional extended family.  Upon meeting his nephew (a sign we had to learn,) uncle J (another sign we had to learn) promptly kissed the top of his head and thus anointed him as a person he doesn’t mind having around.

The baby, of course, found his big, jolly, hat-wearing, Slinky-carrying uncle somewhat fascinating.  I am sure that once he becomes acquainted with J’s TV room, uncle J will promptly become the coolest uncle on the face of the planet.  J, on the other hand, will have to adjust to the fact that there is a smaller, younger person who will command our attention and require our help to get things done.  At the age of one, June Bug is less capable than J at the age of 20…

TGG’s room now features things it didn’t have before: a small travel-crib, baby toys, baby clothes, diapers…  His car has a baby seat.  There are baby bottles, spoons and bowls in the kitchen cupboard.  And there’s humility.  The same guy who last year didn’t understand why being a father matters melted like butter in the hot sun of the desert when he first met his kid.  We have taken like ducks to water to being grandparents.

So as you can see we are starting an entirely new stage in our family life.  We now have relatives. We now get visits from little June Bug and everything seems to have changed.  When we go shopping, we buy things for June Bug.  When we think of future vacations, we think of June Bug.  When we talk about family, we talk about Favorite Girl and June Bug.  Favorite Girl…since she’s not a daughter in-law, she needs a title, and I flatly refuse to refer to her as Baby Mama.  We’ve all agreed on kindness and respect, and we’ve all agreed that June Bug goes first always.  J’s needs and special traits come into play, but I think we all understand that, too.  I mean, there wasn’t really any balking at the “Happy Bitchday” he wrote on June Bug’s birthday card, and it doesn’t surprise me because these are really very kind people.  We made more of a fuss when we noticed than they did.

In other news, the first batch of soaps J made was a success in some ways, and not-quite a success in others.  He needs to add more moisturizer, that’s for sure, and he needs to really spray those bubbles on the surface away, but everyone was impressed with how beautiful and fragrant they are, and how nice the packaging is.  It’s a learning process, and J is learning and tweaking and putting an effort in…  We couldn’t possibly ask for more.

And so ‘summer’ is happening.  The calendar tells us that we have to wait for the official date to call it that, but it’s happening.  It’s here.  J’s on vacation and accepting of this development.  We are ready.  We have suitcases to pack, addresses to plug into the car’s GPS, pictures to take, feet to abuse by walking more than we would under normal circumstances.  Life is good.  Maybe next year we’ll start ‘summer’ -and the rest of J’s non-student life- by taking a bigger, better, longer, more exotic trip, but for the time being this will do…a three hour drive, a nice hotel, and some sightseeing for the people who haven’t seen sights for fun in thirteen years…

Can’t wait!!!

The countdown begins…

It is the Monday of the last week of school.  J isn’t having a good time there.  I got a message from his teacher using the expressions OCD and SIB.  Nice!  The kid who has been behaving nicely at home is being a handful at school.  He broke his headphones.  He didn’t mean to, but there you have it…they are broken, and this made matters worse.

The last thing one wants to hear when we’re almost to the finish line is “this is not going well.”  I am of two minds about this: J’s an a-hole, or J’s just responding to the lassitude that creeps into everyone as the end of the school year approaches.  Well, maybe (just maybe) J’s an a-hole that’s responding to the lassitude that creeps into everyone as the end of the school year approaches.  He can be persnickety that way.  He’s not ready to call it a day, and he wants everyone to rally like he does.  This will test the most saintly of creatures, and I’m sure that patience is wearing thin over there with a few kids chomping at the bit to not do much for a few weeks, and one stomping around trying to get everyone on board with being all-hands-on-deck and beat-to-quarters to the very last minute.

Today I am working on that blanket of paper we call the summer PECS board.  This year we get to put a road trip on it, and we hope J will be excited about this prospect.  On Friday he will get home and, weather permitting, we will walk at a leisurely pace while I explain the map of our lives for the next twelve weeks: a trip to D.C., visits to the doctor and dentist (he might run when he hears these, but it HAS to be done,) ESY, walks to the pool, gardening, making soaps and such…  If he’s not totally bored to tears by the time we get to our townhouse, we’ll be fine.

I confess that hearing about J’s difficulties this morning gives me pause.  He really isn’t being that way at home.  I have searched and searched my mental database, and I cannot find one single instance of SIB in the past few months.  Maybe he does it when we’re not looking?  There are no signs, though, that J has engaged in any of it.  He has been happy and full of energy; when he wants to be alone, he asks us to leave his TV room.  When he wants company, he comes looking for us.  We do things together, but not so many that it seems we don’t give him space.  His appetite has been good, and he loves going to the gym with TGG.

We did notice that he put on a few pounds (nothing to be alarmed…just four pounds that weren’t there before,) and we checked his wallet and the school-sanctioned snacking continues.  That, of course, will be off the table on Friday.  We take him out and he buys his usual snacks, and he accepts the portions we have agreed to at home.  He gets his cookies, chips, popcorn, cheese, and so on in the measure that is healthy.  He doesn’t complain, and he actually looks forward to the Thursday evening visit from the ice cream truck.  If he’s planning The Great Escape, he’s being more discreet than Steve McQueen et al.  Maybe he’s just taking a page from James Thurber’s The Cat-bird Seat, and we will all look like fools in the end.

We are by now, I think, old pros at this transition process, and we will have to apply all our hard-earned wisdom and knowledge when the time comes (next June…oh my!) to end J’s school days.  For now, though, we are simply adjusting to another shift in the routine, and we need to figure out if J’s just ready for summer, or if he’s annoyed and anxious about something else entirely.

When I go back to the summer I was 20 (many, many years ago) I remember that trip to Europe and the frustration of not getting my Three Coins In the Fountain summer.  My mother and godmother took us to The Vatican more times than required, and we didn’t get to see the Sistine Chapel because “it will hurt our necks!  I didn’t come to Rome to end up with a pain in my neck!!!”  In Florence I had to fight for the right to look at Michelangelo’s David without censorship, and the Moulin Rouge in Paris was verboten (“it’s not all fun and games like Toulouse-Lautrec made it seem!”,) but we did get our bit of unwanted nudity at the Lido.  I discovered I had early-onset rheumatism in London, and wasn’t allowed to stay out late in Spain in spite of the fact that the sun had yet to set when we left whatever restaurant we’d gone to for the umpteenth time.  J probably views his life in the same terms; even if we’ve covered his walls with Kate Upton, pin-up girls, and his bedtime is only restricted on school nights (and that because he drags ass with the best of them in the morning,) he probably thinks there’s this huge conspiracy to make him miserable.  Just as I felt that I was on the most anticipated trip ruined by my mother, J probably will think that all the fun and games will be parentally kiboshed while we’re in D.C.  Either that or, in true J fashion, he will be so enamored of the hotel experience (because he LOVES hotels) that we won’t be able to drag him out of the room for the whole four days.  J, it is said around these parts, has a bit of the Hugh-Hefner-in-his-silk-pajamas about him…he likes to lounge and enjoy the AC and the luxury of a room where he won’t be asked to make the bed.

Between now and then, of course, I have to square away the transition to vacation-mode.  I’m sure that the current state of dissatisfaction comes from the limbo between “nose to the grindstone” and “what the heck…it’s the last week!!!!”  We’ll try to remove the SIB.  I’m on it.  I really am…  Especially with the med about to go away and leave us…forever…

Musing…not amusing at all…

We have fallen back into the routine of the end of summer.  Summer school is done, and J has accepted that there is a two-week break between the short schedule of ESY and the regular schedule that starts on the eighteenth.  He knows that he has to put up with me, and he’s being generous about it…so far.  Of course, it’s only Monday, and we have another Monday between now and the Monday when he returns to his beloved “I’m outta here at 6:15” groove.

The phone now rings less.  We seem to be in a lull, a holding pattern before the next “hop on a plane” moment.  We find ourselves having to deal with legal matters that make us feel uncomfortable.  Legal questions regarding my father’s DNR come up from day to day, and I swing from wondering if he fully understood what he was asking for to being upset that he feels a life less independent than the one he had before the stroke is not worth the bother.

My father’s condition improves with each passing day, but we are uncertain as to how willing he really is to work at rehabilitation.  While, on the one hand, he is present enough to undo knots, pull out tubes, and rail against the situation he’s in (albeit silently as he doesn’t really speak,) on the other hand he’s not cooperating with any of the doctors or therapists that come to see him.  Trying to convince him to channel all that effort and energy into rehabilitation seems to him pointless.  He wants, Heaven help us, all or nothing…and fruit…he wants to eat fruit.

This is the part where I get angry, and -mind you- I know it’s pretty unreasonable on my part: my dad’s intelligence, his ability to learn are intact, and he thinks it’s not worth the trouble.  Where does that put him in regards to J’s ability to work and learn?  What does that mean?  I know this is probably very far from his train of thought right now, but…doesn’t my dad KNOW that there’s a repetitive, frustrating element to recovering from ANYTHING?

It’s very hard to watch TGG reacting to all this; we have always told him that one’s best effort is never really wasted.  We learn from failure more than from success.  We strive to do more.  We don’t give up.  We all have something to offer.  Unless there’s no hope of achieving ANYTHING AT ALL, there’s hope for something…  And now he sees his grandfather endeavoring to reach his demise more quickly.  My dad isn’t suicidal, but he isn’t really looking forward to living as any less than he was before he had a stroke.  And TGG, who works in the health care field, and who has been witness and participant in J’s entire life, is confused about what this all means…

Conciliating one perspective with the other is not easy.  While we all understand that my dad doesn’t want to be “a burden,” we can’t really agree that a person in his state (and with his prospects for recovery) is in the kind of situation my dad is envisioning.  Will he go back to playing three rounds of golf a week?  No, but he never did play golf to start with…  Will he go on power walks?  Not really, but he’d given THAT up years ago.  Will he be able to enjoy life?  Well, isn’t that relative?  There are people out there with full use of their bodies and intellectual capacities who are utterly unwilling to seize whatever enjoyment they can from the world.

And then, of course, there’s our view of the world as seen from people who live with J.  In a household where even the smallest achievement might have been preceded by titanic efforts, we can’t quite wrap our heads around my dad’s attitude towards recovery.  We know that we are being unfair, and that we have to respect my dad’s point of view, but we also worry that he is not entirely clear on what his prospects are, or he’s being stubborn about what he considers an acceptable level of recovery.

I don’t want to upset him, and I don’t want him to think that I don’t understand what his purpose is, but I wish I could explain to him that there is much he can still do.  I wish I could convey to him that we’ve often encountered people who think that J is “less” because he doesn’t quite do things like others…and that it’s a waste of time to try to teach him.

So that’s where we’re at.  We’re ok.  We’re just…introspective these days.  We find ourselves asking a lot of existential questions that we’d always toyed with, but that seemed so far ahead in the future that we’d barely scratched the surface…

Summer winds down slowly…the phone rings less…but the rings now feel more ominous.  And that is the new normal…