We all are red-tape creatures…

Paperwork.  J’s entire life is reduced to paperwork.  ALL OUR LIVES are reduced to paperwork.  We are, in spite of our humanity and the qualities that distinguish us from each other, numbers on records, dates of birth that identify us…The Police famously sang that “every little thing she does is magic,” but what “she” did was probably also administrative bullshit on some deeper level…

In less than 24 hours we have scheduled three appointments that involve generating more paperwork.  And that’s just for J.  I’ve made two phone calls regarding paperwork, and scheduling something.  If anyone says a stay-at-home mother doesn’t work, they need to stay-at-home and figure out what it is we don’t do…

Have I ever told you about my “office?”  It even has a “records room.”  Granted, my desk is in the sitting room where there is no TV (because it’s our library,) and the files are stored in the closet under the stairs (it qualifies as a “room” because I can stand up in there up to ¾ of the way in,) but I do a lot of “work” there…here.  The only thing that would make this better is if I had a map table and little figurines that help me plot our movements for the month.

As one who spends a significant chunk of her not-dealing-directly-with-J time traversing a jungle of red-tape, I can tell you that customer service has taken a dive in recent months.  Disillusionment seems to have taken hold of people on both sides of the phone.  People are unhappier than they were this time last year.  Maybe we all have Election Year Burnout…if this condition doesn’t already exist in the Diagnosable Diseases Universe, it should.  We all seem to be weighed down by an additional layer of stress that has piled on top of our pre-existing condition of being alive.

Life keeps happening, doesn’t it?  Our administrative selves (who will go to the polls on Tuesday if they haven’t already) stand on the sidelines while our human selves keep experiencing EVERYTHING in the flesh.

My administrative self, and the administrative self that I have designated to take care of J’s administrative self, is focused, competent, organized, efficient, driven.  My real self emptied the clothes dryer, refilled it with a load from the washer, refilled and started the washer, and then realized that it was the load I’d just taken out of the dryer.  My administrative self went tsk-tsk, shook her head, and docked me ten points for not being as focused, competent, organized, and efficient as she is…she gave me a pass on “driven” because “driven to distraction” is “driven” nonetheless.

My administrative self is the one who goes to J’s appointments.  Thank goodness the blubbering, frayed mother takes a step back when we’re in an official situation.  This is not, of course, an act…it’s what happens when your child (adult or not) needs you to be the best possible representative he/she can have.  The doddering, blundering, emotional mess that runs to the leftover Halloween candy from time to time (yes, we have A LOT of leftover Halloween candy, and don’t you judge me for this) goes “ahem!  You take this one, Ms. Competent Parent.”

If I feel compelled to watch all of Gilmore Girls because my days are going not-so-well, that’s not the administrative process’ business.  If the sun is almost always shining in Stars  Hollow, and the clothes are always cute, and the food always looks tasty, that’s MY escape from “crap, I have a pimple AND wrinkles, my knees and ankles pop when I walk, what’s with the random white wires that grow out of my eyebrows, and pleasepleaseplease tell me why you’re hitting yourself AGAIN.”  If I hide there (while doing ten other things because, as we know, we the inhabitants of ASD-landia are octopuses out of sheer necessity,) that’s not anyone’s business.  Neither is my ice cream or candy consumption, and I wouldn’t DARE show up to a J-centered appointment covered in Cheetos dust.

We all have That Person we are when we have to be official, and that person probably uses a name that we don’t recognize as US outside the official capacity of being a legal entity.  My mother named me María, added an attribute of the Blessed Mother to that, and my last names are hyphenated to identify me as someone’s daughter, someone’s wife, and connect me to my children because their names are hyphenated, too.  If it takes you more than two syllables to call me you’re either insulting me, or you’re referring to administrative me.  Teachers, potential bosses, doctors’ staff, practitioners of the legal profession, law enforcement officers, and people who don’t really remember me from high school are the only ones who call me by my given name.  With my parents the appearance of my name in increments was indicative of trouble: I was my two-syllable everyday name if things were manageable…I became my whole name and family tree if I had inched towards my doom.

Administrative me can find any paper, spew any datum, list any sign or symptom with the sangfroid usually reserved for characters like James Bond.  Administrative me never substitutes “thingy” for the proper term required when a question is asked.  J knows when administrative me is present, and he responds to administrative me with deference that is absent from everyday doddering me.

You may now ask why I don’t summon administrative me at home.  I will answer that candidly: she doesn’t want to come out except when I’m calling someone re: J issues, paying bills, writing a very angry e-mail re: J issues, or dealing with things that belong in the realm of our administrative selves.  I will, from time to time, summon her (plead is more appropriate to describe the process, but summon sounds like I have some agency over this) so she can take over when J has crossed a line that requires a more capable and cool-headed adult to intervene.  She is the one who checks for injuries, persuades him to communicate more effectively, and tells him “you have hemorrhoids, dude…time to bring out the Preparation H.”  Administrative me might make the grocery list, but everyday me is the one who does the shopping.  Hence the Cheetos dust…

Administrative me has taken care of the strategizing for J’s trip to the movies today.  Everyday me will be there for the popcorn and Trolls…but -like Wonder Woman– I will be ready to transform into my administrative self if J looks like he’s about to SIB or meltdown during our outing.  This Friday outing is not MY idea.  Administrative self slapped me and told me to put my big-girl panties on; I can’t cower at home and live in fear of a meltdown.  So, because she is more “together” than I am, I will listen to her and do what she wants. She has promised extra bandaids in my purse, yoga breathing, and backup as needed.

Wish me luck.  I am about to go boldly where I have gone many times before, but I feel like a wuss about it.  Administrative me was very competent this morning…I hope she’s not so tired she takes a nap for the rest of the day.  I’m sure there’s some paperwork I can fill out to put her “on call?”  Maybe it’s here?  On my desk?

 

 

 

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 stumble down memory lane…

Summer is winding down, and I have to start thinking of all the prep for colder months.  You read right: I’m organizing the garage again.

Life is just an accumulation of stuff, isn’t it?  For some reason, I can send along clothes and shoes we no longer wear.  I can hand-down dishes, pots and pans, small appliances.  I have even, in my mission to downsize and pare down, passed along holiday decor that doesn’t make sense for us anymore.  In the middle of that is left of all that sits a plastic crate I can never really address fully…

I opened it today.  I admit to you that I was looking for old letters my dad wrote to me when he was still talking to me, and before e-mail became his medium.  I found, among other things, letters and cards from people that, for the life of me, I have no idea who they are.  I found greeting cards, postcards, notes and post-its.  And I found dad’s letters.

I read everything else, but those I simply put aside and tied with a rubber band.  I will deal with them later.  I can’t do it right now.

Instead I focused on the kids’ old papers from school.  Drawings, scribblings, certificates of recognition, doodles.  I found all of J’s comm books from his first year of school.  I found notes the teacher sent attached to hand-over-hand work he’d done.  We were all so excited!

I found school pictures that document J’s development from a cute waif-like creature to the strapping young man he is now.  I found the first one with a hint of mustache.  I found the first one where he was absolutely terrified of the camera and is cowering.  I found the one where he agreed to wear a long-sleeve polo shirt, and the one where his hair did the Alfalfa thing.

I framed three of the photos and showed it to J.  He smiled at himself.  It took him a moment to recognize the skinny kid with the bright mile and the spiked up hair, but he knows it him.  And he knows these are school pictures, and he knows he’s not going back. Yesterday, in preparation for our short vacation trip in a few weeks, I went looking for a backpack I can use, and J didn’t want me to get one…because it’s the sort of thing that reminds him of school.

We have started introducing the subject of this trip we’re taking.  The place will be familiar, and we’ve chosen the same hotel we used the last time.  Our itinerary will be simple.  We will see what we really, really, REALLY want to see first, and then -when J decides he’s done- we’ll follow his lead.  We’ve been researching places where he might enjoy eating, and we’re packing our comfortable walking shoes.  We will be ready for whatever adventure J is inclined to pursue, and for whatever he’s not.

Yesterday he wanted to go to the movies.  This was a slightly tricky proposition because J is not the kind of individual who can go to watch the same movie several times AT THE THEATER.  At home he can watch the same thing over and over and over and over, but the theater is usually a one-shot deal.  Since we’d been to Kubo last week (have you seen it yet?) we were at a loss.  Our calendar reminded us that The King and I would be showing at the local theater so off we went to watch it.

If you’ve read this blog before you know that J is a fan of musicals.  Most of them, of course, he was experienced at home, and we all know that’s just not the same thing.  Yesterday he got to watch Yul Brynner and Deborah Kerr on the big screen.  It was a treat for him.  He was so happy!  Not only are the songs familiar, but he could see all the details much more clearly.  I have to confess that we had a wonderful time, too.  I am, after all, the girl who understood romance from seeing Yul Brynner reach for Deborah Kerr’s waist before twirling her around the floor with careless abandon.  (Yes…I sighed out loud and, says Dada, I squeaked…)

Today we are in “I have a cold” mode, and I think it’s more a matter of “I want to sit on the couch and be cuddly with you, mother” than anything else.   The weather, though, HAS started changing and J now wants his flannel sheets when he makes his bed, and he has plugged in his electric throw.  He hasn’t turned it on yet, but it’s ready just in case.  Regardless of the temperature outside, he feels a change in the air, and our resident chipmunk running around gathering food is a clear indication that summer is winding down.

So it’s back to the garage and the bins for me.  And looking for a backpack or such is necessary, too.  Post-school life goes on and we are happily realizing that we’re all moving forward…some us limping…some of us bouncing…but forward is that way, and that’s the way we’re going…

 

A little rant on a Thursday…

Please, bear with me…I know I’m going to come across as a horribly old, cranky, not-with-it person, but I do have a point.

Raise your hand if you have a child, or are close to someone, or actually have ASD.  OK…good.  Present and accounted for, and I should have waited until AFTER my shower AFTER our run to raise my hand, but that’s neither here nor there.

Every single day, as J’s parent and primary caregiver, I work with him to make him more socially functional.  This is, as you know if you raised your hand, not as easy as it sounds to those uninitiated in the intricacies of ASD.

J has been taught when to say HELLO, and still has to be reminded.  His response to HELLO is something he has learned through effort and consistent repetition.  HELLO means to him something he does to fit into a social scenario.  When it does happen spontaneously, it is quite lovely, and we make a huge deal of it.

J has also had to learn that eye contact (while disturbing and difficult for him) is something other’s expect, and we encourage it when he feels comfortable with it.  We have also taught him to respond to his name; he knows when he’s being addressed, and we expect him to show a certain degree of attention, even if it’s only for a very brief moment.

We don’t expect J to be a walking, living, breathing example of Emily Post’s etiquette, but we do expect him to behave closer to what is considered acceptable social behavior so that others know an effort is being made, and so he will feel more a part of his social surroundings.  He is NOT, by any stretch of the imagination, a trained monkey, and we know that there are moments when his social behavior will be contingent on other stimuli that he cannot process in a way that satisfies others.  We do, however, expect him to ask for HELP and ESCAPE if he’s feeling overwhelmed and that, as you know if you raised your hand, is a significant social consideration towards others.

And here goes the rant…

Our tall, handsome, burly son is looked at like a weirdo when he displays any degree of antisocial behavior “out there” in the world.  People look out of the corner of their eyes, once in a while you can see they’re commenting, and they react as if J has committed some horrible faux pas if he doesn’t act like we think people are supposed to act when in the presence of others.  By this I don’t mean scratching his but, picking his nose, chewing with his mouth open, or farting in public (although he has done that, and we’ve told him he should ask for the bathroom because it’s off-putting.)  No, what I mean is when someone talks to him, J doesn’t answer or look at them.  That, my friends, is considered RUDE by the general population…

Let’s cut through the myth of the benevolent, happy-go-lucky disabled person who smiles and is extremely friendly.  That can be true, but it can also be bullshit.  Everyone has their moments, and (if you raised your hand) you KNOW that responding to the social cues in the way people expect can be overwhelming and, at times, even physically painful.

This is my point…really, I’m getting there…

We stand in line at the store, and in front of us are countless people who are on their cellphones.  They are talking, or texting.  They barely acknowledge the cashier.  They answer curtly, abruptly, rudely.  They ignore the “good morning” or the “did you find all you were looking for today?”  The cashier might roll his/her eyes, and chalk it up to “that asshole was rude.”

Cue us getting to the register.  We are NEVER on our phones.  We try to engage with the cashier with greetings, and thank you, and what not.  But heaven forbid the cashier should talk to J and J should not engage with them.  The sourness in the face of the person who says hello to him and doesn’t get a hello back is so obvious!  We try to explain, and we encourage J to respond socially…sometimes it works, others it doesn’t.

When you tell a cashier that your adult child has ASD and is non-verbal, they might reel back the deflation they previously displayed, or they might ignore YOU.  Why?  Because the rudeness, or the lack of social skills are the result of something that cannot be controlled.  If a person is focusing on their iPhone and acting like a self-absorbed ass, well, that iPhone cost a lot of money, and they’re paying for a service.  If a person is acting self-absorbed because Autism is part of their make-up…well, how dare they????

Look…I have nothing against cellphones.  Ok, that’s not true…I think cellphones have caused a greater deterioration of social skills than any other item we carry on ourselves.  Cellphones have destroyed our ability to communicate with each other because we are so focused on that one thing that we block out what surrounds us.  People now text in abbreviations and acronyms.  People no longer know how to sit in a waiting room not looking at what they have in their hand.

Case in point: on Tuesday I went to the doctor.  I was the only person there with a book.  The people who were on their phones suddenly saw something on the TV screen that they could latch on to for conversation, and they were GOOGLING about it while talking to each other.  I suddenly realized that they were looking at me like I was the rudest person in the room because I was not participating in this ritual…because I was reading.  So my absorption in this task was rude because I couldn’t look for a contribution to make to their conversation in an item that has no capabilities for accessing information from the ether.

I will sound like an old and cantankerous old lady, but the majority of kids out there are rude!  They don’t know how to talk to grown-ups; they don’t have the basic skills of courtesy and social interaction that my generation had to learn because our parents expected us to know how to behave.  Those same kids look J up and down like he’s a freak because of the way he acts, but how different is their self-absorbed, phone-obsessed, socially-inept behavior from his?  Oh, wait…it IS different because he is not focusing on himself, and failing to focus on others, in a socially-acceptable way.

I’m sure that if J walked around with earbuds, sunglasses, a cellphone in hand, people would just say “oh, he’s just a product of his generation.”  As it stands, J is just strange and antisocial, and we REALLY should’ve done a better job helping him adapt to society…

AAAAARGH!

Rant over…thank you.  As you were.

The patience of J…

I have to say, my friends, that we are impressed with our son.  He has, somehow, managed to learn how to patiently wait while one or another of his parents runs endless errands.  Yesterday it was my grand tour of doctors’ offices, and J spent the morning with Dada, running errands and getting a treat by having a sit-down breakfast at a diner, and going to the library.  The rest of the morning was rather dull; it included going to pay taxes, and stopping by Dada’s office.  It was almost noon when we arrived at my last appointment.  J waited patiently, and Dada dozed off next to him.

The morning, after a brief eruption involving J’s confusion about when his sitters will be coming over to cook dinner for him, went smoothly.  We understand that J wants to hang out with people closer to him in age, but insisting on seeing them Tuesday when they can come on Wednesday isn’t going to make things easier for anyone.  So we had a brief, and intense, back and forth about this, but we managed to make it through unscathed.  (And my blood pressure was actually quite nice when measured at the first doctor’s office, and positively picture-worthy at the second.)

The rest of the day went by quietly.  Dada returned to work, J relaxed in his TV room, and I fell asleep on the couch until J gently nudged me because his ESP (or his hypersensitive hearing) told him the timer for his afternoon snack had arrived.  The only out-of-the-ordinary activity was his desire to get his band-aids on, but I know that was because a) he’d been upset about the sitters being scheduled for the next night, and b) it had been a long morning.

Today he is happy.  He was up very early yesterday (because he knew we were going to the doctors,) but today he was up a little later and happily went back to bed when I said “we’re just going to have coffee so Dada can go to work.”  Big smile, thumbs up, lights out…  He didn’t emerge until nearly eight.

Of course, after having enough blood drawn to alarm the biggest chicken shit that ever lived (namely me!,) the doctor ran all sorts of tests from every angle possible.  The conclusion?  Ah, my friends…it’s fibromyalgia.  Thank goodness it’s not SLE, or MS, or MG, or RA, or ALS…not that the pain I’m often in isn’t an absolute mess for me, but I can deal with this.

I am not now, nor have I ever been, a “pill” person.  It’s not that I don’t love medical science.  Au contraire, my friends…I trust doctors.  Some doctors, of course, are better than others, and they actually take the time to listen to what is going on, and why you’re concerned.  Other doctors are a little less invested, and it’s harder to communicate with them.  I got lucky this time around, and they are being very exhaustive about everything they’re checking.

For starters, the iron level in my blood is quite alarming.  Or it WAS before I started taking iron supplements twice a day.  When I say “alarming” I mean “the specialist called the clinic so my PCP would see me immediately!”  They’re poking me everywhere.  No stone is being left unturned…no part of my body is being ignored.  The anemia was bad enough that they have to rule out internal bleeding so they’re doing every test imaginable to determine if that’s a problem.  By mid-October we will know if there are any major issues that should be surgically addressed.

In the meantime, we keep going.  I take the iron.  I eat well.  I exercise, and I go about my business.  I’ve been told, quite kindly by a doctor closer to me in age, that I need to be nicer to myself.  I could tell she wasn’t scolding me.  I could tell she knows.  She knows about J.  She told me that fibromyalgia is not uncommon among primary caregivers for elderly parents, sick spouses, disabled children.  She told me that we often put everyone else’s needs ahead of our own, and our bodies seem to hyper-react to this.  There are pills, she said, but you don’t look like a pill person, and I think you want to work on making it better through other means.

She’s right.  This thing (that, thankfully, now has a name) will stick around for a very long time, and I have to learn how to deal with it as best suits our situation rather than try to hide it behind a pill.  Maybe, somewhere down the line, that will change, but for now this is the way it goes.

I will get my exercise when J gets his exercise, and I will take my breaks while J relaxes.  I will stop doing EVERYTHING as quickly as I can, and I will focus on doing what I can when it’s reasonable.  I will take walks, read, do the chores, work with J on the things that J needs to work on, and let J do what he wants to do independently.  Dada and I want to get old.  We are no longer young, but we are not “old” yet…and we want to make sure we transition into being elderly in the best way possible.

Oh, it’s not going to be easy.  I don’t think I’m wired for concerted idleness.  I grew up among women who would sit quietly doing other chores as one of them read the paper out loud.  The household of my childhood was a household of productivity that, to the hustle and bustle of the outside world, looked slow and dull.  I don’t have to move a mountain a day, but I am used to constant activity that yields significant results without creating a whirlwind of noise and chaos.

I will try to be better.  I have promised myself this.  I want to feel better.  I really do.

So…here we go.  Let’s be nicer to ourselves.  We DO do a lot.  And J, who has learned patience, can maybe help me learn that I have to be patient with myself when I cannot do all I would like to…

Ah…the weekend…

I have never claimed to have this whole thing figured out, but on Friday I pretty much kicked ass.  That is: I managed to take J to the movies, lunch and shopping without a major incident, and without regretting that I don’t make a habit of carrying a flask full of hooch with me.

On Tuesday J reorganized his PECS board to reflect a trip to the movies on Friday.   Then he switched to “watching a movie at home.”  This happened at least ten times over the course of Wednesday and Thursday, and I had to -very quickly- research WHAT movie, and when. I settled on Kubo and the Two Strings, and even showed him the trailer on You Tube.  As is my habit, I prepared for this possible outing by over-preparing.

I had money, a cab booked with plenty of time, clothes picked out, and a timeline that would make synchronized swimming look like disoriented ducks trying to swim out of a bowl of noodle soup.

I wanted to make sure that this would happen because J insisted (even when he was changing his mind,) and I used the expression “I PROMISE!”  He raised his eyes at that.  Goes to show how often I unequivocally promise that something will happen.  I usually say “we will try,” “weather permitting,” “if the opportunity arises,” “it is quite possible,” “we’ll see if that’s a possibility.”  This time, my friends, I made a solemn vow, and I wasn’t (under any circumstances) going to break my promise.

So after changing his mind, and assuming that I was all bluster and no filibuster, J was pleasantly surprised when I told him (at precisely 11:25 per my schedule) that we were getting ready to leave for the movies.  By 11:35 we were headed out the door to wait for the cab at the complex’s leasing office and, as I had requested, we were notified via text that our cab was running a little behind so it would be a while before we got picked up.

If there’s one thing I’ve learned over time is that you book cabs to arrive with plenty of time for your outing, and that way you won’t be disappointed if they’re running late.  J, who was impressed that I was this committed, patiently sat annoying anyone within earshot with his Proloquo and I WANT TO GO TO THE MOVIES, I WANT POPCORN, I WANT A SODA, I WANT CANDY.  When the cab arrived I think people danced around why taking shots of whisky.

We made it to the mall with plenty of time to go to lunch.  I’m not big on going to lunch at the mall, but I figured since J had done it with his classmates, and he no longer has classmates, it would be fun to see that those outings are still possible.

When we walked into the Chinese buffet, the lady at the counter addressed J by asking “two for lunch?”  He turned to me and handed me the iPad.  I explained that, yes, we would both be having lunch.  We ordered our drinks, and sat there for a moment before I realized that J was looking at me like I’m the dumbest person in the world.   I asked what was wrong, and he rolled his eyes and pointed to the buffet.  Ah…the lady who never goes to lunch at the mall didn’t know that you just get up, grab a plate, and serve your food.  He patiently led me through the buffet, and we sat down to eat.

From there we went to Old Navy.  J loves Old Navy.  He knows how to SAY Old Navy.  He asks to go to Old Navy.  He was so happy when he saw they had the pajama pants he loves that he let out a whoop.  I don’t know if other people get excited when they get Old Navy Bucks, but J was in seventh heaven…he handed them to me like they were a sure-fire winning lottery ticket.

We made it to the theater on time.  J ordered his snacks, handed his rewards card over, and off we went to watch Kubo and the Two Strings.  There were only six people in the theater.  This is good because we were comfortable, but it’s sad because it’s truly the best animated movie we’ve seen this year.  J loved it.  Not only was he happy that I kept my promise, he was thrilled that he liked the movie we went to watch.  He was so happy that he didn’t even mind that he only got a medium soda and popcorn, and that I ate half of his M&Ms.

After the movie we walked to Target, and bought the things we needed for the weekend.  Dada picked us up when he was done with work.  We headed home, and J had a happy, lazy smile on his face.  He was happy to be home and his new pajama pants for the rest of the evening.

On Saturday, however, he was a little less patient with us.  I’m sure the fantastic outcome of Friday went to his head, and he was expecting another solemn vow, but I had to say “we have cheese at home,” and “you are NOT having TWO hot dogs from Five Guys.”  We were not friends for a bit, but we managed to make peace without me losing my foothold on “I’m the mother, darnit!!!”

I know a lot of you are probably thinking “this is no big deal, lady!  We take our kids places all the time, and it’s not a huge production.”  Well, people, I don’t drive.  I am the crappiest, most unsafe, anxious driver ever, and I reserve my driving for “a life must be saved and it’s in my hands!!!!”  J also is used to getting to the movies via Dada or, formerly, TGG.  Going alone with me hadn’t happened in a very long time, and I believe TGG was with us then.  J was also significantly smaller, younger and lighter, and I could handle his squirming, screaming, thrashing, tantrum-throwing body a lot better.

So, Saturday was more of a low point, but Friday was amazing.  And I’m proud of us.  J knows that school has started for everyone, and seeing that life goes on outside that context is awesome for him.  We went to the movies…just J, Slinky and I with an iPad.  And  it was great.

 

Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents

It keeps you (sorta) running…

J isn’t an athletic sort.  I think anyone who sees his hefty frame, and watches him walk (gambol?) to the mailbox can tell that he’s more awkward than not.  His toes turn slightly in, and he doesn’t necessarily keep pace with anyone who walks with him.  Neither can anyone keep pace with him.  There’s a bit of a skip, and a bit of a sway.  He looks joyful when he’s walking, but he doesn’t look athletic.

J only actually runs (the proper definition of “run”) when there’s some sort of thing that freaks him out; dragonflies, moths, butterflies, dogs, birds, or any other imagined threat will make him break into a trot, canter or gallop.  There isn’t, let’s face it, a single chance in this world that he will ever excel in track-and-field events.  He cannot keep up a proper pace, and his breathing is laced with laughter and humming.  He sometimes runs out of breath and coughs, all while smiling broadly and laughing.

J running is reminiscent of the screaming boy in Robin Hood: Men In Tights, or Phoebe Buffay jogging in Friends.

As you all know, if you’ve been reading this, J is a fan of using his elliptical machine while watching musicals.  I have to leave the garage because this is a thing he likes to do by himself.  Whether he’s watching Guys and Dolls, The Sound of Music, My Fair LadyOklahoma!, Gigi, South Pacific, or The King and I, I am not allowed to burst in and sing while he’s working out.  I get a firm (but broadly smiling) BYE!  While out on our walks, I am his personal jukebox, and I take (of course) requests, but while he’s exercising…nope…not allowed.

J alternates his elliptical machine workout with his Wii Fit.  This, my friends, has been tricky.  A) The Wii Fit isn’t smart enough to know that it’s dealing with a person who doesn’t understand some of the instructions, B) J has trouble fulfilling some of the requirements of the correct form for the exercises, and C) running was something we had to do with him whether we wanted to or not.

Ah, yes…aging is not easy, friends.  Aging after you were an extremely active youth who had very little respect for all the fine mechanisms within one’s body is a pain in the ass.  Our knees (oh, our knees!) creak, crack, snap, squeak, and make us yelp.  There are days that, as with life in general, easier than others.  On those days, we are as bouncy, flouncy, pouncy, trouncy as Tigger himself.  Other days are laced with groaning and dread at the thought of running.

It was on such a day, not that long ago, that J insisted on running with the Wii Fit, and I had to accept that, unless the Wii Fit was the thing to use, exercising wouldn’t happen.  After slathering myself with Tiger Balm (which promises to become the fragrance that my body exudes as I age further) I told J “we’re going to figure out how to run with this thing.”

When I say “figure out how to run” I really mean it.  J, left to his own devices, will get the Mii to stand there while the clock keeps time, and every other Mii in Wii Fit Island passes him while looking over a shoulder.  So teaching J to “run” (something we all basically take for granted) had to be done.  Stability, something to anchor him, was the key.  The first time (after the Tiger Balm and some Tylenol,) I ran next to him as he held on to…drumroll, please…a stepladder!

Look, it’s not the most gracious running you’ve ever seen.  It’s nowhere near a cheetah, a gazelle, or Usain Bolt.  The pace continues to be choppy and less than consistent, but now J runs with the Wii Fit, and he listens to his music while watching his Mii being waved at by his relatives’ Miis.  The musical selections are eclectic: some days he starts out with Lou Bega’s Mambo No. 5, and works his way through Christina Aguilera’s What a Girl Wants, and sometimes he’s bouncing around to Todd Rundgren, The Spice Girls (don’t tell him I told you that,) Beck, The Cars…  He started running for five minutes, and now he’s up to 30 minutes.  He covers about five miles in that time.  He sweats and drinks lots of water.  He laughs as I do the chores in the kitchen and dining room, or take care of the plants in the driveway.

Like I said: not the most elegant runner in the planet, but he works at being fit.  He knows he’s doing better than we (the old, creaky people) are doing in that department.  He actually stands on the doorway and giggles when he sees us doing our run in the evening before we cook dinner.  He peeks in on us, and shakes his head as if saying “that’s all you’ve got???  HA!”  And off he goes to set the table for dinner, or to get things lined up for dinner prep.  J will never be thin, or graceful.  J will always go into interpretive dance when telling me if he wants to do the elliptical or the Wii Fit.  Saying RUN sounds more like “WUHN,” but I can tell from his arm and leg movements what he means: expansive back and forth with deeply bent knees means elliptical and musical, and a quick back and forth of close-to-the-chest arms, and tiny, quick steps means Wii Fit and iPod.

We are, like just about everyone else on the planet, following the Olympics, but not with the TV…we know who has medaled by reading the news and following the medal count.  We know the greatest athletes in the world are out there achieving great things.   And then there’s Robel Kiros Habte, the Ethiopian swimmer who has received attention for being the least Michael Phelps‘-like swimmer in the competition.  Like Florence Foster Jenkins, he is probably the best example of doing what you do because you love it, because you want to, because you have a right to be there with everyone else.

Not everyone will live up to what they see in Michael Phelps.  THAT is why he IS Michael Phelps.  How long did it take for Michael Phelps to outdo Mark Spitz?  The thing is that the chubby kid, the uncoordinated kid, the awkward kid, the clumsy kid, the asthmatic kid, the kid who is afraid of water have as much right to dream, and maybe their dream won’t be to BE Michael Phelps, but rather to BE there, too.

So, yeah, J runs…sort of.  He doesn’t win medals outside of our home, our garage, our milieu (limited as it is.)  But he runs.  He didn’t before.  He does now.  You do what it takes, and you should be thrilled when it works out.  I know we are.

Patience for pancakes…

This time last year we were gearing up for the start of J’s last-school-year-EVER.  We were hoping to get him back in the groove of going to bed early enough to be ready to get up bright and early on school days.  Suffice it to say we’re no longer facing that problem.  Getting up at 6:15 is a tremendous luxury we will not be able to afford much longer (other people still will generate school day traffic, of course,) but right now we’re positively loving the prospect of not being OUTSIDE at 6:15 waiting for the school bus.

J seems to have figured out that he can get up later, and still get a full day’s worth of activities.  Today, ladies and gentlemen, he came downstairs bleary eyed and stretching at 8:20.  He was happy.  He was, quite obviously, pleased that he had stayed in his room, curled up in bed, THAT long.

The young man, I will clarify, is not lazy.  Once he is up, he is a very active person.  He does chores, exercises, goes for walks…he is helpful and proactive.  He also knows that staying in bed is totally ok.

Yes, J used to be the person that was up before we were (especially on holidays, weekends, and days when Dada had taken the day off from work,) and we used to think “will this ever end????”  It has.  It is over.  Sometime ago, after the first few weeks of not going to school for the rest of his life, J figured out that it was ok to linger in bed.  He knows we’re up.  We’re not quiet or even discreet about grinding coffee and setting about the morning routine, but J KNOWS he doesn’t have to get up.

The person who used to consider Ramen noodle his equivalent of a breakfast of champions has evolved.  Not only does he THINK about what he wants for breakfast, he actually doesn’t mind if it’s something that will take a little longer than usual.

This morning J emerged from his room at 8:20, and he went about the business of his morning: getting his snacks from the garage, emptying the trash, replacing the bag that lines the kitchen trash can, setting the table for his meal, and THEN looking for his food.  Sweet potato pancakes.  J asked for sweet potato pancakes for his breakfast.  And, you know what, it took me a bit to make them because I was in slo-mo this morning, but J was absolutely cool with waiting.

After breakfast, J helped me load the dishwasher, and then he went downstairs to set his TV and iPad up.  When I called him up to help me again, he did so with a smile.  I didn’t really have to tell him much, I just said we’re doing upstairs today.  Off he went to empty all the trash cans, and then he disappeared and (I confess) I thought he had ditched me, but he suddenly returned with the trash bag in his hand, and I realized he’d been emptying the trash in the basement level.  He cleaned his bathroom, he brought water bottles from the garage, and then he waited to see if there was anything else I needed from him.

We have done several things together, but we’ve also kept busy on our own.  We go for walks to take trash, check the mail, or just to walk.  We check in on each other.  We have lunch together.  We have adjusted the schedule so times are not set in stone, but they are pretty predictable: after exercising, we go for a walk to the mailbox, and then we make lunch.  We no longer have to eat at noon because the world no longer falls into chaos if we eat at one, or one-thirty.  We have relaxed our requirements, and now J decides when he wants his bath.  In fact, I can now take a bath without him going all Droopy Dog on me.  I just tell him “hey, I’m going to take a shower, and I’ll be back in ten minutes.”  That’s fine with him.

We are adjusting.  We are negotiating.  We are finding our footing, we are sleeping in a little, and we are doing fine.

 

 

I wouldn’t say “like clockwork…”

Once in a while (actually, once a week,) J gets anxious and has a “moment.”  It doesn’t last very long, but it is exhausting.  The PECS board is involved, and there is a rather dramatic insistence on scheduling things until he is satisfied that I (we) have paid attention to what he wants when he wants it.

J times this perfectly.  The moment that I am busy, rushing about, hands full of things, attention focused on something that requires me 100%, THAT is when J will want to go over the board in minute detail.

There is a lot of deep breathing involved.  There is a lot of me reminding myself that this, too, shall pass.  There is a lot of holding a PECS card up to my face, tapping it repeatedly and quickly with one finger, and expecting me to stay calm.  I do my best.  I don’t deny that there are times when I bark and say “yes, yes” because I have either something on the stove, or am slicing something, or am trying to get to the bathroom.

If J doesn’t get the EXACT quality of attention that he requires (because he has his standards and they are on a sliding scale that is unavailable for perusal from the rest of us,) he gets angry.  That’s when the chin-flicking comes in.  Once in a while there is light stomping.  Today we had soft fists hitting the chin on both sides.

My strategy was to say “yes, J…we will go to -insert place here- on -insert whatever day he was pointing at-.”  I said it many times.  J was either unconvinced, or the number of times he had to ask, point, demand attention was higher than on other days.  I said yes, yes, my dear…as you wish.  (Oh, Westley…it didn’t work for you, but eventually Buttercup did figure it out, didn’t she?)  I didn’t really have a problem with this insistence because a) I’m used to it, b) it’s pointless to have a problem with it, and c) I knew it would pass…eventually.

After ten minutes of chin-flicking and chin-hitting I decided to say, rather firmly, “ok, well…I understand that you are pissed off and want things your way, but I don’t think this is productive.”  I went to the balcony, and closed the screen door.  J decided that he should take this opportunity to become even more vocal about what he wanted.  I came back inside and he came up to me, quite close, and repeated the tapping of the PECS card, the chin-flicking, and the chin-hitting.

I don’t tell J he’s being bad.  Even when he’s being a brat, I try to say he’s being rude rather than bad.  Rude is an attitude; bad is character flaw.  So I said “J, you are being rude.  I understand that you want something, but we cannot get on with your breakfast and everything else until you stop this.”  He was shocked that I would take that tack so he got closer, flicked harder and tapped more insistently.

I grabbed the keys, took the security bar with me, and stepped out on the porch.  I grabbed the keys in case J decided to lock the door.  Ditto for the security bar.  I could see him because the door has a window, and I know he could see me.  I locked the door, and stood there looking at the tomato plants on the driveway.

I was more irritated than angry.  I know my son has difficulties communicating how he’s feeling, and I know he can get tremendously anxious, but (as I said to him while he was stomping around the kitchen protesting against life and its hiccups) we are stuck together and all the chin-flicking and PECS-tapping doesn’t help.  “I will help you, but you have to listen when I say whatever it is I’m saying.”  On the way down the hallway towards the door I said “I will come in when you’re ready to listen.”

J’s silhouette filled the window.  He was still standing in the kitchen, his snack portions ready to put in the box, the packages ready to go back to the pantry.  I gazed at the tomatoes and took a deep breath.  I counted to 100.  While I did this, I could hear J walking back and forth between kitchen and garage as he put away the snacks, and then stored the box on top of the fridge.  When I got to 100 I opened the door, replaced the security bar, and hung my keys.  J was standing in the kitchen with his binder, and he was obviously done being upset.

I asked him what he wanted for breakfast, and he showed me the breakfast burritos.  I told him to get the things ready, and stood back in case he needed help.  With very little intervention on my part, he made and ate his breakfast.  He kept looking at me between bites, and I smiled at him in a conciliatory manner.

After that we tidied up the kitchen, made beds, gathered laundry and headed to the basement to do whatever it is we do in the mornings.  Every time I stepped into the TV room, or he came out to the sitting room, he told me he loves me.

At 10:30 we did a few more chores, and then I asked him if he wanted to exercise.  He chose The Sound of Music for his workout movie, and climbed on the elliptical machine.  By the time intermission rolled around, I told him it was lunchtime, and he was happy and ready to eat.  We made lunch, and then he asked for his bath.  After his bath he wanted a shave, and after that he wanted his band-aids and wrist brace.

It is an anxious day.  I know that.  He has been “off,” but he has worked his way through it.  We didn’t start very well, but we figured it out.  Maybe it’s the weather.  Maybe it’s just the excessive togetherness of two adults in the house together all the time.  Maybe he’s just needing the reassurance that he has a say on what he wants to do, and when.

I understand what little I can figure out about all this.  I make sure that I am as fair as I can be, and that -because he was worried about me not being around the day of my surgery- I stay where he can see me if I have to “step outside.”  It is the same dynamic, but it has changed.  I don’t know if that makes sense, but that’s the way it seems.  New and improved?  Same formula and new packaging?  I don’t know how this would be marketed…

All I know is we’re trying to make it work.  It’s not quite running like clockwork, but if you’ve ever looked at a clock’s mechanism (not a digital one, of course) you know it’s quite complex and beautiful.  It takes years to become a master clockmaker.  It takes effort, and attention to detail.  It takes patience and skill.  It takes vision and an understanding of the way pieces work together.

We’re working on it….