The downside of being beloved…

Would you like to discuss my ability to wear shoes for the past five days?  It is not that my feet are swollen, or that they hurt.  It is not that my shoes are uncomfortable.  My ability to wear shoes is being hampered by my son.  You know him.  He is J.  The kid who now realizes he loves me and cannot stand the thought of me leaving the house?  The one who has been taking my shoes away because they might propel me out the door much like Dorothy’s ruby slippers eventually led her home after a bit of heel-clicking wishful thinking?

I am not complaining.  I am merely pointing out that being in J’s radar has its not-so-cool moments.  We have previously discussed his ability to go all Droopy Dog on me.hqdefault

We have gone a step further.  We are now a weird combination of Buddy the Elf and Rhino from Bolt.

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Friday evening J’s helper came over so Dada and I could go to the grocery store.  We were back in less than an hour.  On Saturday we had dinner plans so we had made the arrangement with J’s helper to come over with her husband and, as they usually do, cook dinner for them and J while we went to a restaurant that we’ve always wanted to try.  This place is closing for good tomorrow night so we figured we’d sneak in one meal (especially since all their wine has a 30% discount.)  After breakfast, we arranged J’s board and put the corresponding picture for our outing and his helper.

J was outraged.  J was not having it.  J removed the PECS, and I put them back.  He removed them again, and I put them back.  Once more…and once more again.  I waited until ten-thirty to call her and re-schedule for Tuesday.  J was satisfied by this…

We ran our Saturday errands, and when we got home J unceremoniously removed my shoes and continued to do so the rest of the weekend.  I explained I can’t go outside to water the garden barefoot.  I was handed my shoes, sent out to the garden, observed while doing my chore, and -no sooner had I stepped foot indoors- divested of my shoes once more.

I tried being casual about footwear.  OH, here I am, sitting at my desk wearing my garden slip-ons.

Like Obi-Wan Kenobi, J can feel a disturbance in the Force quite easily.  Propelled by his instinctive knowledge of the sound that shoes make as they cover skin, he came out of the TV room and removed the offending items.  Or he came to the garage, guided by his inner voice (which, I’m sure, sounds a lot like Sir Alec Guinness, and not necessarily in Star Wars…maybe more like The Bridge on the River Kwai?) and pointed to my shod feet.  This dance has gone on consistently for the past few days…

Yesterday morning J hijacked my closet.  Not in a Stanley-Tucci-in-TheDevilWearsPrada way.  J hijacked my closet so he could hide all the clothes I might wear to go out.  Anything I’ve worn out of the house (and not just in the garden or going to the mailbox, mind you) had been pushed back to the deepest recesses of the the closet; all else had been buried under layers of clothes that are at-home garments.   We had it out.  I put things back.  He put them away.  I sent him out of the room.  He sneaked back in.  I raised my voice.  He flicked his chin.

We were exhausted by the time we were done, and I had to lock the bedroom door and listen to ten minutes of J pacing back and forth while trying to determine if it was worth it to get a butter knife to unlock the door.

Eventually he age up, and we negotiated a peace pact.  He got a very small pizza for lunch, and I found my shorts.  When he was pleasantly relaxed after his turn on the elliptical machine (he skipped the intro and the intermission and entr’acte, but he watched the rest of The Sound of Music while working out,) I introduced the prospect of Dada and I going to dinner.  The crust, cheese and pepperoni inspired some benevolence and we managed to go out to dinner.

This is good.  It cost an arm and a leg to pay the helper, leave ingredients for a nice dinner for them and us going out to dinner by ourselves, but it was totally worth it…

Of course, I had to pay with relinquishing my alarm clock to the deepest, darkest depths of the back of the bottom drawer of my bedside table, but it’s a small price to pay for only getting the once-over and being found satisfactory in my at-home outfit of yoga pants, t-shirt (with holes in it…because that makes it look more sincerely at-home-y,) and no shoes.

Yes, I’m pandering.  Yes, I know that’s bad.  Yes, I’ll work on being more assertive.  Yes, I’m half-lying right now…  No, I don’t mind admitting that.

People think J’s behavior is cute.  Dada relates these experiences to his co-workers and he invariably gets and “aw!!!  That’s sweet!  He loves you!!!!”  Yeah, he loves us.  Yeah, he seems to have realized that he wants to have us around.  But…

J IS 21 years old, and he IS tall and big and heavy.  This is not a cutely obsessive waif-like figure we’re talking about.  He is not dangerous, but being bossed around by a dude who has overcome his Hulk tendencies while remaining entirely capable of performing a haka to convince me that I want to put my alarm clock away…well, it can be overwhelming.  I don’t give in because I’m afraid he will hurt me.  I give in because not doing so can be tremendously exhausting emotionally and physically.

For the time being J is my bestest friend, and he wants to be with me always.  I know this will change.  I know he will start giving me the emotional Heisman soon enough.  I don’t want this to fray our relationship so I will accept that, for the time being, my shoes are strictly on a “need” rather than “want” basis.

It’s the downside of popularity.  I get it.  Celebrities love the attention until they hate the attention.  I am currently wishing for some mild rejection, but it’s not my decision to make…as long as my entire closet doesn’t disappear…

 

Finally getting my Sally Field moment…

Very early on Wednesday morning, one of J’s substitute teachers arrived to sit with him while Dada and I drove down to the hospital.  I had tried to explain to J that we’d be gone for a good part of the day, but he wasn’t particularly interested in this tidbit.  When I poked my head into his room at 6:25, he was blissfully asleep, and I could only air-kiss him and head out.

On the short drive to the hospital I asked Dada if he thought J would be OK once he realized I wasn’t there.  The thing is, my friends, that J has seldom awakened to both of us being gone at the same time.  Ok, let’s be honest…if J has woken up to ME not being there it’s been rare, or -more accurately- nearly non-existent.  Dada, who was in “concern mode,” said it would be fine.  We arrived at the hospital and checked in at 7 a.m., and for the next five and a half hours, J was a concern, but not the most pressing.  I hate to admit that, but it’s the truth.  I was, quite honestly, too focused on getting general anesthesia for the first time in fifty years.  I can tell you that anesthesia has come a long way since then…not that most of you didn’t already know that!

I could go into details about how apprehensive I was about the whole “they’re going to cut into me” thing, or about how I have been so prudent about showing my breasts my entire life, and how it all flew out the window on Wednesday.  Instead, I will tell you that I was ecstatically impressed with the staff at Ruby Memorial Hospital in Morgantown.  Everyone was amazing.  Everyone was professional, efficient, skillful, and compassionate.  I don’t care if they saw my breasts, I love them all.

Now that my paean to “people who have, under totally professional circumstances, seen me naked” is over, I will tell you about my homecoming.  This is the part where I’m tickled pink.  I came home with the hugest wad of gauze I have ever seen tucked into what can only be referred to as an “institutional-issue bra,” and looking very much off-kilter in the chest department.  It was like half of a pigeon and then normal me.  I wasn’t groggy, or woozy, or even loopy.  I was perfectly  mobile, and perfectly rational.  I did not imagine J’s reaction to seeing me for the first time that day…

HE WAS HAPPY TO SEE ME AND HE SMILED!!!!!!!!!

I’ll give you a moment to imagine that.  J, who is perpetually saying BYE to me, saw me and grinned from ear to ear.  I went up to him and, offering my right side, asked for a hug…he could tell the mound of gauze had some sort of important meaning and side-hugged me with gusto.  It felt REALLY nice!

The rest of the day went as usual.  Of course, I have been following doctor’s instructions and being extremely good about my recovery.  Whenever I went into the TV room to say hey, J would smile.  If I sat next to him, he’d hug me gently.  It was all very nice.  I got the distinct impression that my son had…gasp!!!!…MISSED ME????

I figured the rosy glow of my return would have diminished by yesterday morning.  After all, I was so obviously “home” on Wednesday evening that I couldn’t possibly NOT be “home” on Thursday morning.

We slept in on Thursday morning.  The people who are usually up before six on a weekday didn’t actually sit up in bed until past 8:30.  The night had brought thunder so monumental that it seeped into our dreams and rattled us awake.  Although I was sleeping soundly, I could hear the thunder, and -because I’ve learned to check the weather for Tornado Warnings on a regular basis when things sound menacing outside, I dimmed the iPad and checked our status.  The rest of West Virginia was getting badly throttled, but we were relatively fine.  So at three in the morning I went back to sleep, and didn’t wake up until much after we usually do.

J had slept in, too.  I tiptoed down the hall and his light was off so I ducked back into our room, washed my face, brushed my teeth, and put on my robe so the bandage wasn’t visible.  I went back and found that J’s light was on, and I knocked on the door.  He was making his bed, and when he saw me there he smiled so brightly that it almost made me cry.

I know it’s not going to last.  I know it’s a reaction to what he deemed an unexpected absence on my part, but J missed me.  He was happy to see me on Thursday morning.  He behaved beautifully for the sitter, and she said he was wonderful and calm, but J missed me.  He liked seeing me at home when he woke up.  He hugged me.  He kissed me.  He spent the whole day smiling at me.

Dada found me sniffling in the hallway after our son had gone downstairs to fix his snack box.  J had patted my shoulder and smiled at me as he carried his iPad to the kitchen level. I had remained in the hallway regaining my composure.  Unlike Sally Field, I wasn’t going to let my joy and emotion carry me away.

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Dada said “are you ok?”  I explained what had happened.  He said “that is extraordinary, honey!  See!  You always think he’s not going to miss you, and now you know he does.”

J does miss me.  He does care.  He likes me.  He really likes me.  As the mom of an individual in the Autism Spectrum, I don’t always get to relish this knowledge.  A lot of the time I speculate that he recognizes me for who I am rather than for what I do.  For a brief moment (which has extended to his doing all the chores today while smiling at me) I can bask in the glow of what he feels when I come back from a brief absence.  It’s kinda cool…

So, since I cannot react accordingly for the time being, I will let Roberto Benigni do it for me…

That about covers it…

 

Lightning storms are exhausting…

My father was an expert on electricity.  I don’t mean that with even the slightest shred of sarcasm.  My father was born, raised and educated in Argentina, and he started working at a young age so, once he stopped his formal education, he continued it through dedicated, enthusiastic reading.  If my father, even as he got older, didn’t know about something you mentioned, he would go seeking information about it.  Phone calls would randomly be received asking if you knew about this, that, the other thing.  If you knew, he would go AH!, and then hang up and try to find out more so he could be better informed than you.  He was competitive, but in a good way…except, of course, when lightning struck.

My parents lived in abodes made of concrete when I was growing up.  I lived with my great-grandfather and my great-aunts in a house made of wood.  Whenever I visited my parents and I had the misfortune of hearing thunder, I knew what was coming.

 

While other parents issued general warnings about the dangers of lightning, my father would launch into a very detailed explanation of why we couldn’t take a shower, go outside, stand in front of the window watching the storm, touch lamps that were flickering, answer the phone…

These, of course, were the days when phone and power lines were not buried, except in bigger cities.  Our family didn’t pass lightning storms watching TV, even if the power had not failed.  We also didn’t walk around barefoot.  Or touch appliances.  Or cookie sheets.

I know there’s some science in all his warnings.  I also know that Snopes and Mythbusters have debunked some of it.  Because I grew up in a place where tropical depressions, tropical storms and hurricanes are a yearly occurrence (sometimes in bunches rather than singles,) storm preparedness is a thing for me.  Weather awareness is something I preach.  If anyone in my household hesitates to respond according to plan, I turn, yes, into my dad.

The one bastion that will not give an inch is J.  It turns out, ladies and gentlemen, that J’s TV room is THE safe room in the house.  It’s in the basement, it has concrete slab on three sides, no window, and is in the center-back of the structure.  It also has a closet that, should things get really testy, holds all three of us safely.  There is bottled water there.  There are pillows, flashlights, and things to entertain ourselves with should we have to stay in for a significant while.  There is, for crying out loud, a ball pit.  I can still, while the power is on, get a good wi-fi signal to follow the weather reports.

J is insulted that we would, how dare we, pick his bat cave for our safe room.  This was in evidence yesterday when we had a Tornado Warning.  We calmly, because that’s the way to do it, strode into J’s TV room and planted ourselves in the middle of the room.  J, who was sorting his movies into piles (a classification system that makes sense only to him,) turned and looked at us as if we’d just burst in with flaming torches in our hands.

 

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“We are just going to sit here unobtrusively,” we said, and Dada grabbed a storybook while I checked the extent of the warning on the other iPad.  “It expires in fifteen minutes,” I announced; “we’ll be out of your hair before you know it!”  I looked at J and he was not particularly thrilled by the idea.  The next fifteen minutes were peppered (liberally) with the word BYE, and we basically ignored his desire to kick us out of the safest place in the house.

Trying to explain a tornado warning to a person who doesn’t understand weather except as something expressed by music is not easy.  Vivaldi?  Yeah, yeah…it’s a little more complex than that.  Karen Carpenter was not far off the mark when she sang that “rainy days and Mondays” always made her sad.  The problem is that we have come to, as a culture, relate certain atmospheric events with certain emotions.  Eeyore is followed around by a raincloud.  A rainbow crosses the sky when someone is happy.  The sun shines and birds chirp happily when the moment is joyous.  Lovers run across across sunlit flower fields.  The wind blows fiercely and the rain batters the windows when someone is in searing pain.  I tried to figure out if Twister was a good way of introducing J to the concept of why we need to go into that room, but then I realized that the movie ends with a sunflower field where a tornado has cut a swath, but all else pretty much stands, gloriously drenched in bright, hopeful sunlight.

I can explain weather to J. We have sat there looking out the window as snow falls, heavy and slow, building up around us.  We have sat there water racing down the blacktop and into the drains as the world seems to melt with the rain.  We have watched sun break through clouds, and warmth suddenly suffusing the air after it’s been cloudy all day.  These things, in J’s mind, don’t always go along with the sort of music that we -with our standard-issue brains and conditioned minds- would choose.  I have seen J happily prancing along to the school bus in sunshine while humming “Singing In the Rain.”  I have witnessed him bouncing around in the garage while rain falls abundantly and “Walking On the Sun” is streaming from his iPad.  He has sat in our very sunny, very hot back patio, shielded by the umbrella as bees buzz from flower to flower around him, while listening to “White Christmas.”  

After the storm had passed (and we’d rescued the tomato plants that had been knocked over,) I sat J down to tell him about tornados and why we need to sit in his TV room to be safer.  J’s view of the world is different from ours.  His bubble is multifaceted, multicolored, multi-textured, but it has very little to do with the other bubble, the outside one…the one we manage, deal with, handle, convey to him.  There are things he just doesn’t grasp, even if they are important, crucial, essential.  The Wizard of Oz is a magical adventure that starts with a tornado…J probably thinks “hey, guys, that sounds like fun…you go right ahead and do that while I sort my movies in private.”

My dad’s system won’t work this time.  Think, think, THINK!!!!

 

 

The not-so-cute or uplifting list…

From time to time you see online one of those “what parents of children in the Spectrum want you to know.”  I’ve read them all.  I agree with some of the stuff on there; we want you to know our children are not unintelligent, unaware of what is being said about them, blah, blah, blah.  That is a blah, blah, blah from a place of love and respect.  I don’t want you to think I don’t appreciate what people are trying to do with these lists and essays.

There’s stuff I’d like people to know about J, he of the firm placement in the Autism Spectrum, that doesn’t quite “fit” the usual pattern of these lists.

  1.  J is a pain in the ass.  I love him, but this is true.  When J wants what he wants, J is a total hard-ass about it, and it’s only through the lavish dispensing of patience and firm negotiation that we can get him to not be a total asshole about things he wants NOW.
  2. When J doesn’t like you, he will NEVER like you.  He will, at best, tolerate your presence, but he will not last very long, and he will make sure you KNOW he doesn’t like you.
  3. We will say “oh, it’s only he gets used to you.”  We will be lying.
  4. J’s concept of privacy does not extend to other people.  He WILL walk into the bathroom while you’re on the toilet, and he will rush you to finish.
  5. Yeah, he knows how to unlock the dinky indoor locks with a butter knife. He will also use his thumbnail.
  6. While incapable of reading a calendar or understanding the concept of time, J will know when it’s not a day for Dada to be home.  If we look too relaxed while having our coffee and watching Reading Rainbow (don’t judge us…the news was too stressful so we got rid of cable and LeVar Burton makes us happy,) J will get irritated, march upstairs, pick an outfit for Dada to wear to work, and then unceremoniously hand him the can of shaving foam.  This is, in J’s world, the equivalent of handing the Black Spot, or a fish wrapped in newspaper.  It’s an announcement.  It’s an ultimatum.
  7. J’s sartorial sense is either very good, or he has memorized Dada’s work combos over the years.  He never picks anything that clashes or looks like it’s meant to be worn for an occasion other than work.
  8. If J doesn’t want to go out, J will not go out.  You can tempt him with anything you can imagine, but he will not budge.  Even if you’ve made plans and are really excited about them, you will find yourself with egg on your face…the kid will not budge.  He’s not interested in making US happy; he just wants to be happy.  If that means he gets to screw us out of an outing, so be it.
  9. J’s single-mindedness can be truly irritating.  This is made worse by the fact that, at times, he refuses to communicate when he’s obsessing about something.
  10. There are moments when being J’s parent is truly exhausting, and we yell at each other because we cannot yell at him.
  11. Some of the quirks can really drive us nuts.  The flicking of the fingers.  The tapping of the head.  The band-aids.  The turning the lights on and off three times, disorienting us old people who tend to suffer from vertigo…
  12. J cannot abide seeing the cell phone charging.  It has to be putawayputawayputawaynownownownow…  At least he doesn’t do it while out and about to other people…

The truth, and I know this sounds horrible, is that he pisses us off once in a while.  Like him, we have our good and bad days, and there are times when we are just not in the mood to do what has to be done.  We still have to do it.  We do it while gritting our teeth.  We do it while cussing under our breaths.  J knows when we’re angry.  I think it’s fair that he knows, even if he cannot always understand it.  I think that J deserves to know that he is as much of a human as we are, and that these difficult interactions are part and parcel of the whole gig.

J is persnickety.  J is demanding.  J is obsessive compulsive, and annoying.  He wants attention, and then he doesn’t.  He wants affection, and then he doesn’t.  He is careless with us; he loses his patience with us (sometimes very quickly and for no apparent reason,) and he hurts our feelings.  He always thinks he’s right, until he realizes he’s been wrong, and then he quickly forgets it.

We don’t know, for a fact, that J loves us.  That’s the nastiest bit of all.  We know he is used to us; we know he feels close to us.  We know that J recognizes us, and he feels bad when we’re upset or sad because of him.  We know he loves to hug us, and he likes our fish kisses and displays of affection.  We know that he trusts us, and that he likes -for the most part- having us around.  Does that mean he loves us?  I could go into the whole Fiddler on the Roof/Tevye and Golde thing and sing “Do You Love Me?”  I could argue that love is different things to different people, and that to J it is something along the lines of what we see from him every day.

I would like to tell you that it doesn’t crush us to think that we are simply constants, and if we’re gone we can be replaced.  We like to think that, like us, J spares a few moments each day to be thankful for the chance to be a family, or that he misses us and is glad when we reappear in the scene after being gone a while.  The truth, my friends, is that we don’t know…

What I want people to know, for the most part, is that -yes- J fits into all those lists that say he’s special, and has abilities, and sees the world differently…blah, blah, blah.  I also want people to know, nay, UNDERSTAND that this shit isn’t easy, and that we’re human and fallible and short-tempered at times when it’s most inconvenient because it doesn’t help matters.

Yes, J is awesome, and lovable.  But he’s also this complex human being who -d-uh!- has huge issues trying to interact with us.  Even WE think “shit, does he have to be so…argh!…all the time!”  It’s not pleasant sitting on the toilet in the dark because he wants the lights out NOW.  It’s not pleasant sitting on the toilet with him walking in and demanding action NOW.  It’s not pleasant that he feels entitled to invade our privacy, take up our space, rule our life, alter the course of plans, days, you name it.

It is what it is.  We love the kid, but there are moments when we hate this situation.  In an alternate reality, J would be living by himself, not wanting to deal with parents who sit on toilets, or make plans that HAVE to include him. It’s not that we didn’t raise him right…it’s just that it is what it is, and no amount of training completely alters the “what it is” of it…seriously.  At most we’ve managed to get him to not open the bathroom door AS abruptly.  Or we’ve managed to get him to wait (after yelling “I’M ON THE TOILET” so loudly that the neighbors know what we’re doing) outside the door, only to open it and find him RIGHT THERE…FACE TO FACE WITH US…

We love, respect, admire our son, but he can definitely be a hugely self-centered jerk sometimes…  SO, yeah, he can be cute and charming, and funny, and entertaining.  He can be uplifting and inspiring, and awesome and warm-ish.  He can be affectionate (it’s usually because he wants something…how like every other kid is that?,) and he will hug us (sometimes a little too hard,) but…

it is what it is.  Not a very uplifting list, but…sincere?  Honest?  Slings and arrows come my way…

J benevolently rescues his parents…

With the arrival of warm temperatures, and the progress of our garden, we love to sit outside.  We take our books, park ourselves around the table, and read until the sun starts to set.  We’ve grown accustomed to the trill of the cicadas, but we are still freaked out by their habit of dive-bombing against leaves, patio umbrella, us…  J, guided by his fear of flying insects and strangely whirring creatures (I swear the cicadas sound like they’re trying to contact the mothership,) prefers to stay indoors.  On Monday night this was the best decision ever…

It was a nice, warm, comfortable evening.  The whirring wasn’t too loud, but the cicadas were circling us with looks of annoyance on their scary little faces.  Inside the house, J was happy and relaxed watching a movie after dinner.  The cats were lazing about in the sitting room.  Because Dada is always arguing that we can’t keep “air conditioning the great outdoors,” he had closed the sliding glass door.  I keep the A/C at 74 degrees so it hardly ever kicks on when all the fans are going.

We live in a safe neighborhood.  By that I mean that once in a great while a car gets broken into, things are stolen from porches, or there is a random break-in while someone is away on vacation.  This all happens so seldom that it out of an excess of precaution (and because I am, in essence, a chicken shit) that we put a stick on the sliding glass door track to keep it from opening completely.  Ok, there are TWO sticks…a shorter one so that I can leave the door open for the cats to come in and go out, and a longer one that prevents the door from opening AT ALL.  The longer stick is made of wood.  The shorter stick is metal.

As we sat outside reading I told myself “I will stop at the end of this chapter.”  Page 132 was my goal.  I was on page 131.  I am reading Barbara Tuchman’s The Guns of August, and I’m going slowly because I have lots to do.  During the day I have J supervising me, and so I take a while every evening to catch up on where I should be in my reading.  I wanted to stop at page 132 so I could go back inside and eat a cookie.

And then I heard the click of metal against metal.  Dada, who can’t hear very well, heard it too.  It was a sound that we immediately, and correctly, attributed to the short metal stick falling into the sliding glass door track.

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We fake-calmly walked to the door, and saw Miss Zelda on her back, happily stretching over the door track.  Somehow she had managed to push the stick towards the door and kick it into the track.  We fail to see how this could have been accidental…  If you have never seen Miss Zelda you cannot begin to imagine how accurate I am in describing her as a dead ringer for Lucifer, the cat in Cinderella.

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Make no mistake, just because she isn’t smiling like Lucifer doesn’t mean she’s lacking that mean streak.  We have seen the glint in her eye as she passes us on the stairs, bolting towards the kitchen level as we make our sleepy way to coffee in the mornings.  The only thing preventing her from doing away with us is that we keep the cat snacks on top of the refrigerator, and it’s not easy for her to climb up there, but the day she figures it out, we’re toast.

Our plan was to try to jostle the stick out of the track with one of the garden poles.  Valiantly (because that’s how I roll,) I attempted to go in through the small space that remained open.  My arm did really well.  It would have been awesome if there hadn’t been the rest of me to contend with.  For some strange reason, the man I married thought that -being six inches taller and weighing 40 pounds more than yours truly- he would be able to get into the house that way.

Two solid minutes of “are you calling me fat???” ensued.  We then realized that we had to think of alternatives.  Mind you, at this point Miss Zelda is just looking at us like she has won the lottery.  Because every night we have the same exchange about the car not being locked, I told Dada to go check if he locked the car.  For a second he was really happy because, of course, he ALWAYS forgets and get upbraided for it.  The logic was: GARAGE DOOR!!!!!!

I admit that, in my desperation to get inside (why is it that when you can’t you HAVE to pee???,) I tried to persuade the cat to cooperate.  The cat refused.  Seconds ticked by and I heard a lull in J’s movie soundtrack.  Eureka!!!  I decided to call out to him…

Now, this is the part where I must do a flashback narration.  The year is 2004.  The place is Santa Fe, NM.  It is a cold, cold night in November, and I have gone to close the gate while TGG holds the door open.  Dada is in Colorado, and J is -as was his habit at the time- running naked around the house.  TGG is in his jammies, and I am wearing a coat, but I’m still cold.  TGG is goofing around and, as I call out “make sure you don’t let the door close…we’ll be locked….” CLICK!

Long story short, I had to break a window to get in.  Try as we might, J flatly refused to unlock a door for us.  We had told him to never, under any circumstances, open the door to the great outdoors.  After ten minutes of trying to jimmy windows, persuade the unpersuadable, shimmy in through the pet door, I punched a glass window and got us into the house.

It was with this memory in mind that I called out to J.  J!  J!  J!  He came out of the TV room looking annoyed at the interruption.  I know I looked stupid.  Of course I did!  I could see myself reflected back in J’s expression.  It was an “ARE YOU SERIOUS???” expression of the highest quality.  I meekly whimpered “can you let me in, please?”  J took a couple of steps towards me and looked at the cat (his arch-nemesis!,) looked at the stick in the track, looked at his mother..

I heard him sigh.  I saw him roll his eyes.  He bent down and picked up the stick, pulling the door open for me.  Thankyouthankyouthankyouthankyou…I hugged him.  He shrugged and went back to the TV room.  I sprinted up the stairs to open the door for Dada who was just starting to walk back to the side of the building.

“Either you got very malleable in short order, or the cat has a merciful streak,” he said.  I told him J had answered my call and opened the door for me. ” Thank goodness,” Dada said.  “I had visions of you disassembling the whole door frame to get back inside…”  We went back to the sitting room and peeked in on J.  “Hey, bud…thanks for opening the door!” Dada said.

J just rolled his eyes.  Our effusion was unnecessary.  We are, after all, his to take care of from now on.  We obviously cannot be trusted to not get locked out by a feline.  We need J to look out for us.  I know this because today, when I went to the garden to water, J stood inside and pushed the sticks as far away from the door as he could with just his foot.  He didn’t make a big show of it…  It was all very Bob Fosse-like.

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And then, like Shane, he was gone…

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Seventeen days in…

Habemus groovus…  Or, in plain English and not that freakish attempt at Latin, we have a groove!  It’s not the best groove, and I’m sure it will be fine-tuned further as time goes by, but it’s a groove nonetheless.

J’s newest obsessions are simple and vaguely familiar: organizing MY closet, saving electricity at all costs (to the point of people suddenly finding themselves showering or shaving in the dark,) and making sure Dada is out the door without fail on days when he’s supposed to be heading to work.

The binder with the breakfast selections is a hit, and we’ve only had issues one morning when Dada was in charge and J got yogurt and pear chips for breakfast.  To hear Dada tell it, J gave him the most amazing WTF look ever.  That’s what happens when mother has a headache and stays in bed until her Tylenol kicks in…

J now has his own apron and chef’s beanie, and he happily dons them when it’s meal prep time.  He has opinions, too.  It’s a little like having Christopher Walken in the kitchen…61659035

This applies to things like mushrooms, garlic, cheese, basil, and chicken pieces.  Pasta, also, elicits a hand movement that beckons greater amounts to the cooking pot.

We have discovered that he sometimes doesn’t want to go out.  It’s not that he’s upset, but he wants to stay home.  Maybe he’s just happy in his lounge pants, or maybe he doesn’t want to be hassled by getting in and out of the car and sitting in traffic.  Sometimes he’s just happy doing whatever it is that he has decided to do.

For the past three days J has been sorting a two-cup container of glass and resin beads.  He does it his own way, and it’s more efficient than the way I showed him for doing it.  He watches movies or listens to music while he sorts, and he lets me come in and look, and then he benevolently waves me away.  When he’s done with that container, there’s a second one of equal size filled with a greater volume of smaller beads.  I don’t know if that will make him happy or not, but we will find out soon enough.

We are learning a little more about how to navigate this post-school world each day.  Some days are easier than others, and some days our nerves are frayed while other days we seem to be fine regardless of the difficulties.  Some days things are truly overwhelming for all of us because, well, it’s three adults living in the same house, and some of us are parents while one of us -in spite of being an actual adult- cannot always be left to make his own decisions.  Other days we deal a lot more easily with the limits that have to be set to make things function properly.

Life is complicated.  We try to find balance at home and things start unraveling elsewhere. We have always been an independent unit; we have not really had a network of relatives and friends supporting us every step of the way.  Yeah, people ask…  Yeah, people call for the holidays.  Yeah, we get an e-mail here and there, but people don’t “get” what this is like here.

Take, for example, a recent family event.  One of Dada’s nephews got married, and I had to repeatedly explain that no, we weren’t going to the wedding.  A) It was out of state, B) if we couldn’t manage to travel as a family for my father in-law’s funeral, why would we then make arrangements for A PARTY, and C) J wasn’t invited.  What are we supposed to do in that case?  Not take J and leave for a few days so we can partake of some social event?  Or take J and find someone to watch him for us while we go to the wedding?  When we said no, we weren’t going, the next question to arise was “well, isn’t Dada coming?”  My reaction, basically, was this…

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I asked Dada anyway.  His reaction was this…

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We sometimes wonder (I mean REALLY wonder) why people don’t “get” why this is not a practical request.  We have actually caught ourselves sitting around at the end of the day pondering this…

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We’ve reached the sad conclusion that people are just not that invested in us.  Not that they have to be, but it would be sort of nice if they put just a teensy weensy bit of thought into why traveling 2500 miles each way might not be something ONE of us wants to do just to attend a wedding.  Seriously, how would it look if my husband of seventeen years hopped on a plane to go to a black-tie wedding at a ridiculously expensive venue with an open bar while I sit at home single-handedly taking care of our 21 year-old disabled son?

It’s not that he can’t, mind you.  He’s had to travel before.  His father’s illness, the funeral, work…he is OK with doing that because, well, how can he NOT go…but do we REALLY think he’d want to go to a party without me?  This is the man who asks me if I want to go to the hardware store with him because we can grab a coffee on the way back, we can talk and hang out.  He wouldn’t enjoy being there stag when he has a wife who is at home trying to negotiate with a person who uses an iPad to communicate his wants and needs.  In what world is this logical???

People KNOW we won’t go.  We really are not particularly social (hello?  I’m the one who waited for the bus wearing a t-shirt that reads “Do I Look Like a People Person?”,) and when we do go to a party we tend to stay together, chatting with each other, basking in the opportunity to not be wearing yoga pants/track pants/t-shirts/slippers.  We HAD to get invited (ah, social obligations…they will be the death of us…just send us an announcement and we’ll send you the same exact gift as if you’d sent us an invite, thank you,) but did they have to NOT add J’s name in there?  Do we really seem like we would show up with Brother Kong wearing a tux and making a spectacle of himself thus ruining everyone’s expensive good time????

Come to think of it…it does have its appeal, doesn’t it?

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So, in conclusion, people don’t GET it.  We don’t live like they live.  We don’t have the luxury of hopping on a plane and showing up for a wedding just because there’s an open bar.  For one: how easy would it be to find a truly trustworthy person to take care of a 21 year-old developmentally disabled individual for a whole weekend?  For another: how would HE feel when suddenly thrust into the care of others so we can disappear for a few days?  It’s bad enough that we have to arrange for someone to help watch him while I’m in the hospital for an outpatient procedure…can you imagine for a weekend????

We are falling into the groove.  We are making this work.  We are figuring it out.  We are still surprised that people are so clueless, and we can’t help but feel comfortable in our isolation.  Explaining, obviously, doesn’t work.  People don’t get IT…

The sad thing is we are starting to think they’re really not supposed to after all.