The age-old question we can’t seem to answer convincingly…

I really don’t know how often people have asked us what we do with our time.  The amount of times we’ve answered the question as as innumerable.  Apparently, we suck at answering because it always crops up, sometimes from the same exact parties after a span of several years.

I guess since we’ve arrived safely (and rather noisily if I’m to base this conclusion on the squeaking and cracking of bones that accompanies late-night trips to the bathroom or kitchen, getting up from the floor, and so forth) to what is called “middle age”, people expect the onslaught of everyday life to abate somewhat.  We should, by all accounts, be either full-fledged empty-nesters or on the brink of this elevated status.  We are not…either full-fledged or on the brink.  It ain’t happening.  Not no how…  People probably have visions of Dada and I starring in some of those commercials where people “get in the mood” while doing dishes or go mountain biking after having their calcium supplements in a lactose-free shake.  The idea that we have a youngest child who is, legally and chronologically, an adult gives everyone the impression that, somehow, the Autism Fairy has lifted the spell cast upon our family life and we’ve joined the ranks of “normal” couples.

Our day starts at 5 a.m.  Dada crawls out of bed first, and showers.  On his way down the stairs, he meets J who has to be fed and dressed by 6:15 at the latest so that he can be on the bus and on his way to school by 6:25 a.m.  At 5:45 (a courtesy extended to me by a husband who knows hot-flashes wake me up frequently in seamless unison with a bladder that, after two children and many years, has decided to disrupt my much-needed rest) I join the parade and take over grooming and dressing duties, as well as J’s morning routine of I-love-yous and counting toes and kissing noses.  (Hey, you do it your way, I do it mine.)

By 6:30 I’ve parked myself at the dining table where Dada and I have our coffee.  If were actually eating something hot, it’s there…ready to go.  At 6:45 Dada heads upstairs to get dressed, and I go to make our bed and finish my to-do list for the day.  He doesn’t leave the house without me tying his tie and helping him gather all his things.  By this time, TGG is up and about and heading out the door (pretty much in that 22 year-old guy tuck-and-roll fashion.)  Everyone is where they’re supposed to be by no later than 7:40…

The rest of the day I cannot be as specific about because it all depends on what each of us has to do.  Some days I have laundry to wash, soups to make, cookies and breads to bake, materials to prepare, buttons and seams and rips to repair, vacuuming, sweeping, mopping, bathrooms, and so forth.  By the time that 1:30 rolls around, I need to sit down and prepare myself mentally for the rest of the day, and for J to be home and all that implies.  At 2:30 I walk down to check the mail, I stop by the management office to talk to my friend (the manager,) and at 2:50 I am standing waiting for J’s bus to pull up.  By the time we reach the door, I’ve heard the words NOODLES and SODA well over a hundred times, and I’ve managed to interject HOW WAS YOUR DAY several times in there.  I mention to J the weather, what we’re doing when we get home, how excited I am to see him…

We are usually indoors and putting things away no later than 3:10.  He is changing his clothes, getting his things from his bedroom to the TV room, and preparing snack after that.  He also gathers laundry and brings it to the laundry room.  At 3:40 he has his snack, and I’m telling him what we’re doing after that.  We count between bites…that stretches his snack for another twenty minutes so that TGG is calling to say he’s on the way home as we put J’s dishes in the sink and he gets the kitchen straightened up.  By the time TGG arrives at 4:20, I am downstairs because J has settled in and picked a book to read in the evening, and I’ve been banished to the living room.  At 4:30 (if all is going as planned) Dada calls to say he’s on the way.  I then go upstairs to start dinner, IF dinner is a simple, straight-forward affair; if it’s something more complex like lasagna or manicotti or shepherd’s pie, or tacos with fresh tortillas, it’s already going by the time he calls.  Dada is home before five, and he changes his clothes (while J insistently points to his shoes and belt as they go up the stairs together) so he can come help in the kitchen.  Once J has determined that Dada is changing clothes to “be home,” he joins me in the kitchen to help with whatever cooking prep is needed, and then he sets the table.  Mind you, he knows how to set the table, but we still have to count how many utensils, plates, etc. will be used.

Dada comes downstairs and starts cleaning what I’ve been using, and J goes to the basement to wait until dinner is served.  TGG is basically in his room, either changing for class or trying to relax after pushing gurneys and wheelchairs all day.  Reluctantly, he drags himself downstairs after we call him four or five times to help with dinner, or to help J with laundry.  Dinner is on the table by 5:30 and we sit down to eat, counting between bites as we go.  When J is done we still have to remind him to put his chair back where it goes, and take his plates to the sink.  When it’s his turn to help, he goes downstairs until we call him because we’re all done eating.  We are usually downstairs by six-thirty; the kitchen is by then spotless, and we sit on the couch reading for a while; if Dada has to work, I sit on the couch and read while he sits at the desk.  I go to J’s room and work on an isolated skill: a set of flash cards for vocabulary, counting beads, doing worksheets, safe signs, and so forth.  Once I’m done with this, every fifteen or twenty minutes, I get up from the couch and, with J’s help, check the laundry.  Throughout all this, of course, I’m explaining step-by-step what we’re doing, how we’re doing it, inserting vocabulary, asking J to repeat while enunciating more clearly, and adding the necessary ASL to the task…this is going on from the moment he gets off the bus…it doesn’t really stop.  It happens during his shower, while he’s eating, while we’re doing dishes, cooking, washing clothes…you know this, of course…silly me!

At around 7:45, J and I work on one of his craft projects.  At around 8:30 we fold laundry.  At nine he takes his shower (and gets his shave.)  By 9:30 we are reading a story.  At ten, if he’s ready, we gather up his things (because ALL THINGS must be brought up and down each day) and go upstairs to put him to bed.  By ten-thirty he has put away his laundry, cleared his PECS board, turned down his bed, and gone through his nightly routine of kissing and hugging everyone, making sure there are no cats in his room, singing “going on the yellow bus,” and saying the words YELLOW and BUS at least twenty times, even after we’ve closed the door and have started towards our bedroom.  We don’t really fall asleep until 11 because we keep an ear out for any impromptu giggling (which means J has turned on his light and is sitting up in bed, and must be tucked in again…to the tune of YELLOW and BUS several times over,) and then we start over the next day.

Dada, of course, goes to work and faces all the challenges of trying to get a database for thousands of employees to run smoothly while still keeping up with the other tasks his job entails.  And he’s got meetings, and a phone that rings constantly, and support requests via e-mail that he has to see to, and a boss, and a boss’s boss, and walks up to the HR Department at the hospital and people from the hospital coming down to his little corner in a room he shares with other employees.  All this happens between 7:40 and 4:30, with a half-hour for lunch and hoping I don’t call him to say “J needs seeing to immediately.”

We also can factor into each day the following elements: doing the Wii, giving J his med, dealing with the minuscule details he gets hyper-focused on during grooming and dressing, or the little OCD routines about plugging in his electronics, cleaning his DVDs, accepting the fact that he cannot simply throw the cats outside, doing the recycling, organizing his snacks in his box, and so forth.  Things that, of course, for a neuro-typical 18 year-old are not at all an issue.  On a good day (a day with no phone calls from the school or mysterious outbursts of discontent over something we can’t immediately figure out,) things run more smoothly…seem a little easier.  Maybe we’re just doing this to ourselves?

In hindsight, it doesn’t seem like we’re at all busy.  I don’t even know if we’re really busy or if we’re just imagining it.  Last night, after hearing my beloved husband trying to explain to his unmarried, childless, also middle-aged brother that our schedule is…interesting…I actually took the phone from him and said “HEY!  What number could you count to when you were eighteen, dude?”  Um…infinite, he said.  “Well, we’re working on getting to thirty with J,” and I handed the phone back to Dada.

If that’s not explanation enough of how we’re busy…well…then I guess we’re not.

The ever-growing laundry pile…

TGG won’t budge.  Neither will I.  I have bypassed his laundry basket several times when working around the house, and I will continue to do so.  J thinks this is amusing.  When TGG gets home from work, we greet each other in the usual affectionate way, but a quick look over my shoulder tells him I haven’t washed a stitch of clothing belonging to him.  J looks from one to the other of us and smiles…

Because I am bound and determined to not jump in and save him from himself, I haven’t even checked if there’s toilet paper in his bathroom.  Don’t worry, there’s a caddy with plenty of extra TP in there, but by now it might be running low.  If TGG needs more, he will have to actually walk down to the garage and find the spot where we store a treasure trove of toilet paper.  I won’t tell him where it is.  I will tell him he needs to look for it.  Dada has said “well, nothing’s stopping him from going to buy some, right?”  I fail to see the downside of this alternative…extra toilet paper at no charge to us…hmmmmm…

We have also stopped worrying about whether we hear him move around upstairs after a certain time each morning.  We know he sets his alarm.  We can hear it blaring all the way down in the dining room.  We also know that there have been times when he has risen from his bed, turned it off, and crawled back in to sleep.  On Monday I sent Dada upstairs to check if he was stirring as we couldn’t hear him walking back and forth from his room to the bathroom.  He was up.  He was also being stealthy so he could go A-HA!!!!! when we slipped back into being “parents” and yelled at him for not getting up.  Since I was definitely not born yesterday, I wasn’t going to fall for that…  J, who doesn’t believe in people lingering in bed, inevitably opens TGG’s door on his way downstairs to leave for school.  The only adjustment we’ve convinced him to make is not leaving the glaring hallway lights on, but there’s no way to talk him out of trying to jostle TGG out of bed.  I can guarantee you we don’t put him up to this tactic.

This is neither all-out war nor cold war.  This is Mother Hen clucking a resounding NO to herself whenever she’s ready to swoop in and treat a chicken hawk as if he still was a baby chick.  This particular chicken hawk is more Henery Hawk than fierce hawk, by the way…

200px-Heneryhawk

 

Every morning I used to ask TGG if he wanted coffee, if he was having breakfast.  I always got a grumbled NO and “it’s too early.”  This morning, in light of a batch of chocolate chip scones I made yesterday, TGG bounced down the stairs asking what was for breakfast.  “You had me at chocolate chip,” he said.  I should put a bag of chocolate chips at the bottom of his laundry basket, at the bottom of the washer and dryer, and in his closet…but only after he has folded clothes and brought them upstairs to put away.

If you think I’m being intractable and unfair, welcome to the club.  TGG agrees with you.  He, after all, has to get his intractability from somewhere.  I don’t want him to merely acquiesce, though.  I want him to understand.  That, perhaps, is the most difficult thing for a parent to achieve.   I think this, among all the others, is our main struggle in the parent/child relationship.

Take, for example, J’s insistence on repeating a phrase or word over and over again until HE is satisfied.  Last night was such a night, my friends.  First we went through a constant repetition of a request for CANDY that was, of course, turned down in the same constantly repetitious way.  Before bed, the phrase was YELLOW BUS, but broken into YELLOW and BUS until we echoed the words.  This pattern usually lasts for about 20 repetitions per night…last night we went well over fifty repetitions.  Trying to get Dada and TGG to understand why I had to play along until J was satisfied was not easy, and it made me look more J-friendly than TGG-friendly.  I won’t give in to one kid, but I give in to the other.  I could tell that TGG was not particularly amused by my willingness to answer back through the closed door while J kept saying YELLOW and BUS.

I can reason with TGG.  I can’t always reason with J.  The burgeoning pile of laundry is not something that, until he’s ready, will alleviate an anxiety for TGG.  The repetition of words and phrases is soothing to J for reasons I can’t quite explain.  Repeating things, for J, is like “stroking the furry wall” in Get Him To The Greek; it brings him down from some sort of spin his mind is in, and I have to actually help him focus (which is what he’s trying to do) rather than leave him to obsess on his own.  There you have an instance of me absolutely NOT understanding something, but wanting to figure out what to do with it.  My way of negotiating these things with J has to be, because circumstances force it, different from how I negotiate with TGG, and yet…J gets a lot of my intractability, too.  I sometimes dig my heels in even though I know it’s going to create a temporary crisis in our midst because it is, in the long run, more productive to do so than to not do so at all.

It’s not that I don’t understand TGG.  I do.  I understand that he’s been forced, in many ways, to grow up beyond his years because of J.  I also understand that I have to, whether I like it or not, force a little more independence out of him if he is to claim his independence fully at all.  I am, I know he feels this way at times, the albatross around his neck, the main reason a covenant exists between him and his brother.  I have made it clear that this is a relationship that requires a great deal of commitment, and I’m sure TGG feels that he has some leeway to ease into adulthood at his leisure.  Regrettably, as John Lennon wisely put it, “life is what happens to you while you’re busy making other plans.”  At one point or another, that laundry basket will have to be addressed…

I’m adding chocolate chips to the list, just in case…

 

 

What if you threw a parade and nobody even rained on it????

The concept of a generational gap hadn’t crossed my mind for a long time.  In fact, it hadn’t crossed my mind since I was on the younger side of the gap, and now -as I find myself revisiting it- it looks more like a canyon (a deep, wide one) than a simple gap.  Also, surprise surprise, my knees are not in any shape to allow me to jump that distance…a) I couldn’t really spring up that high, and b) I would botch the landing.

J and TGG are both at stages in life that are, in a sense, worse than adolescence.  At times I suspect that their generation (the so-called Generation Y) has been very poorly treated by mine.  What generation I belong to can probably be figured out algebraically: seventeen days too late to be a Baby Boomer, I’m considered a Generation Jones baby, but I was by three members of the Lost Generation, one of the G.I. Generation and a great-grandfather who was born in 1880.  In my childhood home there was no “you are special,” “here’s a sticker,” “good effort,” or “you deserve a cookie!” when all I did was what was expected of me.  Praise was reserved for the truly notable actions and achievements that didn’t fall under “that’s what you do on a Monday.”  My aunts coddled me, in a way, but they were also very clear about what was happening out there that I had to face up to when I grew up.  I appreciated the coddling parts, and I listened to the “bitter pills of reality.”  I tried to do the same with my kids, but that wasn’t the prevalent mentality when I was raising them.  Barney the Dinosaur made everything super-dee-dooper.  Everything and everyone was special and awesome.  Kids stopped “losing” and “came in second.”  Everyone was talented and everyone got recognized.

I often wonder if all the clapping we did when our kids were getting potty trained, all the “everyone’s a winner” attitude, and all the participation ribbons that read “You Are Special!” did more harm than good.  There are days when I ask myself (without a hint of irony) if TGG has received more positive reinforcement than J has…being that he craves it so much more than his “I struggle with so many things” younger brother.  Don’t get me wrong, please, because we give J a lot of positive reinforcement, but it is heavily laced with pragmatism.  “Yes, you can slice your own chicken now!!!  Good job, J!”  “Yes, that is how we wash our hands to prevent communicable diseases, J!  Good job!”  “You have successfully learned how to turn the key without nearly snapping it in half while it’s still in the lock!  Wonderful!!”  We did almost throw a parade when he finally potty-trained himself, but that is understandable because he was EIGHT!  We cannot lather the same kind of praise on both brothers because TGG and J are not on the same footing.

Allow me to illustrate.  TGG is an older, employed version of Axl Heck from The Middle:

At the age of 22, he still walks around in his boxers, reacts with the arrested development version of himself, and is appalled when we don’t make a fuss about every little thing he does.  Don’t get me wrong, the kid’s a darling…he’s better than many, but he can come across as horribly helpless at the worst possible moment and, while tremendously competent and independent at work, will act like I’ve just asked him to remove and then replace his own kidneys with his eyes closed and one hand tied behind his back when I say “clean your bathroom.”  I think this happens A LOT in A LOT of households like ours.  These kids, sadly, have had all these expectations thrust upon them (some of them by us, their parents, and others by, well, media) and now it’s just not happening the way they expected.  This Boomerang Generation got a raw deal, and we -partially- are responsible for it???

J, on the other hand, is more like Brick Heck:

If J could talk, I’m sure there’d be more than a fair share of “I’m lying” moments under his breath.  Because Autism makes it easier for him to take things at face value, conversations like the one between Brick and his mother, Frankie, happen around here…only wordlessly.  While we can finesse our way out of certain situations, other times we are knee-deep in panicky moments that could be prevented.

The fact is that we’re all getting too old for this kind of interaction, and it shows.  TGG is doing his best to feel empathy for our plight, but he’s just not old enough for that…just too old to react like a teenager when I remind him that his work ID card (which opens doors, people!!!,) the earbuds to his iWhatever, pens and markers (all of them permanent ink) should be processed in the laundry room.  He also doesn’t take it very well when I tell him “you should REALLY have only ONE stack of bills on your desk, not five different stacks ALL OVER THE ROOM.”  This led to an impasse, and we’re now facing a shutdown less severe  and as annoying as the one the US Government is in…

This type of rebellion is really a non-issue.  Doing chores, and I’ve said this to him, is not a way to get me to say “yes, you can go out” because he’s a grown-up.  Doing chores is a way of alleviating some of the burden that falls on me, and that is caused by -guess!!- the kids themselves.  Every day a basket full of scrubs, work uniforms, Axl Heck-like boxer shorts, socks and t-shirts are brought downstairs by TGG.  Every day J marches downstairs with a laundry bag full of clothes; even if you’ve done two loads the day before, here come two full loads again.  The amount of clothes they generate is only comparable to the amount of toilet paper they go through…

So I’ve thrown the gauntlet down.  I’m letting the laundry accumulate.  I’m not opening doors and checking if people made their beds.  I KNOW the bed has been made…I can hear the exertion and “notice me, notice me” flapping of sheets and plumping of pillows.  The same kid (TGG) who cannot hear me calling out that it’s dinner time or the vacuum cleaner approaching his vicinity in the same menacing way as Jaws would makes sure I hear him making his bed, announces his bed has been made, and then waits to see if I will OOOH and AAAH in the doorway while he stands in the kitchen with bated breath.  Not…happening…

This generation, as I said, is overly dependent on stickers, ribbons, praise and rewards.  Not to whine, but where are my stickers, ribbons, praise and rewards????  I don’t get any, thank you, and I don’t expect them either.  If the consistency of my housework hinged on praised and rewards, we’d be living in a pigsty.  Taking a cue from his older brother, J has been trying to get rewards for doing what he used to do for fun.  That bird???  Not…flying…  And, strangely enough, negotiating with the irascible, stubborn, autistic kid is infinitely easier than negotiating with his neuro-typical older brother.  J is moved to action by his desire to wear clean clothes; TGG is currently motivated by some strange “stick it to the mom” mentality.  I’m all out of stickers, and I think it’s time for praise-worthy to be redefined in the family dictionary…my great-grandfather would have said something about when the Americans arrived on the Island in 1898, and I’d have slunk back to the kitchen to shell peas.  Yes, it was a “not another SPEECH!!!” tactic, but it taught me that sometimes it’s better to do the thing you’re asked to do to prevent yet another “lesson.”  TGG has yet to learn this…much to my chagrin; as long as J doesn’t start emulating his brother, we’re cool.

The laundry basket is full, but rumor has it (or so I was told by a room-mate’s boyfriend some thirty years ago) that there are FOUR ways one can wear the same pair of boxer shorts before having to wash them barring any nasty accidents.

While I feel a little like that humorous quote about the boomerang that was thrown three years ago and never came back (the person lives in fear,) my foot is down and it’s staying down.  No more stickers.  No cookies for effort.  The gauntlet…it’s about to get thrown…my foot is waiting for it.

Feeling snug as a bug in a rug…

Cold weather…that’s what’s ahead.  The weekend, so the forecast tells us, is not going to be fit for man or beast.  Ok…that’s a mild exaggeration, but the idea of going grocery shopping in 27 degree temps is not particularly appealing to me this weekend.  That’s why I did the whole hunt and gather thing yesterday…at the grocery store, of course.  One small push of activity yesterday afternoon and, cue the French horn fanfare, I don’t really have to go anywhere this weekend for anything other than a desire to go out.

Today they’ve promised me some rain.  I’m still waiting.  I want the rain.  I want it to pause from 2:30 to 3:15 (the window of time during which I wait for J at the corner and then walk him home,) but before and after then I welcome the whole rain thing.  I am firmly inclined to spend most of the day in bed…reading!

It is selfish, I know.  There are things to do around here.  I bought new bookshelves and a bedside table for J’s room.  I want to reorganize the pantry because, with all the help I get from the men in my life, a sense of chaos has woven itself on the shelves.  I need to gather laundry and, somehow, talk myself into loading washer and dryer…  I just don’t feel like it right now.

What am I reading?  Mirror Mirror by Gregory Maguire.  I am a big fan of the fractured fairy tale.  My favorite of his books, so far, is Confessions of an Ugly Stepsister, but I did enjoy Wicked quite a bit.  I think it’s because I wasn’t the pretty little girl…I was more of an odd duck…that I enjoy someone else’s version of events.  This might be why The True Story of The Three Little Pigs by A. Wolf (as told to Jon Scieszka) is a big favorite around these parts.  If you haven’t read it, please find it and read it…it’s an awesome story and kids (even the ones who start out favoring the Pigs’ version of it) enjoy this book.

I know J’s going to be a handful this weekend.  He came down from his anxiety-loop yesterday and we went grocery shopping (he tried to finagle something that wasn’t in the list into the cart, but we didn’t budge.)  This morning he realized that his brother was still at work.  Ah, all is right with the world…we are back to our routine!!!!  There was much rejoicing.  I know that, with the inability to spend prolonged periods of time in the great outdoors, the young man will get antsy…and I want to be relaxed and rested for it.  Can you blame me?

Upstairs, in the kitchen, an electric kettle and several varieties of tea are calling out to me.  My book (and the cats) wait for me in my bedroom.  In fact, more likely than not the cats have taken over the warm spot I left behind when I got up to write this.  I won’t punt them off the balcony (although one DID try to kill me this morning as I was coming down to have my coffee,) but I will move them aside and settle in for a nice read and some tea.

Don’t judge me.  I am the mother of two.  I have The Great Gonzo (who is acting all Eeyore-ish about summer vacation) and J (who has a Valentine’s Day dance tonight and who seems enthused but might balk at the last second.)  I have a nearly-fifty year-old husband who misses me and wants me to “not be frazzled” this weekend.  So I’m going (against my nature and my better judgment) to listen to the man’s request and be lazy.  I will compete with the cats for the Lazy Trophy, and I will finish my book, drink my tea and then realize it’s time to get ready to pick J up and go into panic mode…

But, until then, I am a big ball of blissful lassitude…the lady in the flannel shirt, the fuzzy socks, the yoga pants and the ringer off (don’t worry…the phone will flash angrily if it rings…)

Off I go…

Leaping into the arms of decadence because we all KNOW Autism can peak when one least expects it, and I might just have bought the wrong kind of Parmesan cheese or the wrong brand of Pita bread, and the anxiety-loop will resume, but I’ll be ready for it…