A funny thing happened on the way to gratitude…

Gratitude is a strange feeling.  We say “thank you” a lot, but we don’t always realize what that means or implies.  J is a big fan of THANK YOU, but it often sounds like what he means is F*CK YOU.  With him it can be such an automatic response that the urge to say “yeah, yeah, whatever” is often there, on the tips of our tongues, waiting to tumble out.

I will confess one thing to you: our gratitude is often arrived at in a crash, or expressed through gritted teeth.  This is not because we don’t have what to be grateful for, but rather because -a lot of the time- we end up being grateful for things we might have been dreading, and things we were unprepared for until they happened.

Take, for instance, the Teeth Issues that dominated the first half of 2013.  We are, surprisingly enough, grateful for those, and we really would not have dreamed this gratitude was at all possible.  We are grateful because of several things: a) J’s teeth have been taken care of, b) J actually learned to communicate better in light of this situation, and c) we realized J is a lot more resilient than we thought.  We are grateful that The Kid Who Was Godzilla has learned (somehow, someway) to manage the anxiety that would have turned Teeth Issues into a catastrophe a mere three years ago.

For some strange reason, we are also grateful for J’s recent meltdowns at school.  I know this sounds weird (wrong even,) but the truth is that we have figured out that it’s not the medication that J is having issues with, but rather some sort of -as yet undefined- dissatisfaction with the environment there.  While we are not grateful that we don’t know what causes this behavior, at least we can be grateful that it is not a constant attitude that seeps into everything he does and that reverts us to where we were when we couldn’t even go shopping without incident.  So, let’s say we’re grateful that this is contained to one location so far, and that we can work on solving the mystery of its provenance as diligently as possible.  Our success hinges on so many factors that it’s not even funny, but…we’re grateful that we are no longer entirely paralyzed by the notion of having to figure things out.

We are grateful that TGG seems to be maturing a little more with each passing year.  I say “a little more” because nowadays kids aren’t fully ready for the adult world until they’re much older.  At the age of 22, TGG still hasn’t fully grasped the complexities of adulthood, and -from time to time- he will do something tremendously bone-headed, but we are grateful that he has moved one more step away from his innate stubbornness and generational arrogance.  It might be that he realizes he’s too old to not take advice, or that we’re too old to put up with childish bullshit from a grown-up, but -inch by inch- we’re moving forward on that territory and, eventually, we’ll be firmly planted in Grown-Up Land…or, rather, TGG will be.

We’re grateful for the Keystone Kops-like quality of our guardianship process.  If that hadn’t exploded in our faces when it did, we wouldn’t have been angry enough to get REALLY proactive about the whole thing.  Until we had to actually take over and bypass the attorney, we didn’t know what the heck we were doing, or how to work through the intricacies of the process.

Annoying and overwhelming though it has been this year, we’re grateful for Dada’s job.  At a time when so many people are trying to make ends meet, we’re doing that, but with the certainty that -for now- there’s a steady income to support us.  In the great scheme of things, we have all we need, and we are not facing any desperate want.  There are so many people out there who have nothing, and need so much…we haven’t taken a vacation in years, but we have a roof over our heads, food on the table, medical and dental insurance, and what more can one really ask for???  Love…and that we have in spades…

We’re grateful, even when we think it’s a backhanded blessing that we’re being given.  Do we deserve all that we get from life?  Not all the time, no.  I admit to you, and this is not an easy thing for me to say, that I don’t deserve nearly half of what I get.  I am, you see, a bad daughter and a bad sister, and being as good a mother and wife as I can be doesn’t fix that.  I am suffering from terminal petty selfishness, and there are things I cannot let go of because I am not as good a person as I’d like to be.  That I am, in turn, being deluged with all these wonderful things makes me feel terribly guilty, and I feel even guiltier when I say to myself that I am thankful for all the good (backhanded or no) that comes my way.

This is the thing: we have a severely disabled  young man we are raising; his future is uncertain because, well, all futures are, and the complexity of disability and such plays heavily in this mix; we don’t  own our own house, and the one we live in is, truly and sincerely, a tremendous luxury that we’ve committed to because -selfishly- we want to be more comfortable, and we want J to have his own space; we have debt that isn’t crushing…if I worked outside of our home, which I don’t do because we’ve decided I should be 100% available for J year-round.  We have a ten year-old car that runs beautifully, but has emotional issues; we have a 22 year-old son who’s learning to be a grown-up and sometimes resents us for expecting more from him than he wants to give; we have aging parents that we don’t see as often as we should; we are aging very quickly, and not as gracefully as we’d like to, but we are trying -very hard- to not fall apart in the process.

Sometimes I look at our life, and I ask myself why are we so happy???  We live paycheck to paycheck, have an 18 year-old who needs supervision when he showers and can’t count farther than 30 (on a really good day,) never go anywhere exciting or do anything fantastic.  Our home is decorated in the style I like to refer to as “genteel decay on a broken shoestring,” and we don’t belong to a cool social set.  We play board games, buy the Sunday Edition of the New York Times once a month, and take a whole month to read it, curl up on the couch to read together, consider a 100-dollar pair of shoes an excessive luxury, have disjointed traditions that don’t fit with those of the rest of the world, own more rugby scrum caps than a whole rugby team would need even though NONE of us play rugby, dread the notion of a car repair or a major medical emergency because either would crush us financially, and can never own a dog…and yet we’re disgustingly, profoundly, sincerely, honestly, wholeheartedly happy…

Through gritted teeth, and directly from the deepest corner of our hearts, we are happy…and if that isn’t enough cause to be grateful, then we can add all the little trimmings that go on the side: our kids are funny, smart, interesting, a little weird; we are madly in love with each other; we cook really well; we have our health, even if it squeaks from time to time…  We are grateful.  Grateful.  Grateful.  Grateful…and today we can say it without gritting our teeth, and with the house smelling of turkey that is slowly roasting, and cats that are snoozing in corners, and J that is walking in and out rooms demanding attention and then immediately rejecting it, and TGG pushing gurneys and waiting for 4 o’clock, and my family diaspora that I can never repair, and Dada’s family that we don’t see often enough, and still we manage to live steeped in love and the craziness of our “normal.”

And for all that we are grateful, no “yeah, yeah, whatever” about it.

Are you ready for some holidays????

Yes, my friends, it is THAT Friday that precedes the weeklong Thanksgiving Break…the expectation leading up to the Battle of Helms’ Deep comes to mind, and I’m not among the Orcs advancing; I’m waiting for the Orcs.  They come trimmed like Christmas trees, trussed up like turkeys, and with sides of cranberry sauce, gift-wrapping, and days and days of J being at home.  Did I mention that J had a runny nose this morning?  Did I mention we start the holidays by going to the lab at 9 a.m. (on an empty stomach) to have some blood work done?  Timing, quite obviously, is NOT my forte…but here we go anyway.

I have lined up all my ducks.  There are plenty of chores to do, plenty of Thanksgiving prep work to complete and a healthy dose of crafts projects to keep J occupied and honing his fine-motor skills.  The weather forecast calls for cold and snow, but I think that’s the lesser of my concerns at this point.  Being home isn’t really the problem, but finding being home tedious can always pop up unexpectedly from a harmless-looking corner.  The schedule I’ve come up with changes up the order of things every single day so that J, who loves routine, isn’t bogged down by it and refuses to segue from one task to the other, from one day to the next.

A part of me is dreading this upcoming weeklong break, and another part is taking it as an opportunity to work on the things that J has been tripping over at school.  We keep wondering why J gets upset at school, and why he reacts to routine there with less pleasure than here.  If one place should be boring for J, it should be home.  We are the ones who offer very little by way of variety, who put demands on his time, and who make life one long snooze-fest.  I honestly think J’s anger or dissatisfaction would be more apt to come out here, at home…but it seems that it’s only at school that he feels like something is “off” and he needs to act out.

No, don’t worry, my intent is not to bring the same sort of misery to his home-life over the course of this week.  What I’d rather do is re-direct some things so that, maybe, I can send him back to school with a new strategy.  (If you’re going to wish me good luck I will be eternally grateful…I think I’m going to need it.)  The school handles a much larger population than I do, and I think (given time and doing my best Jane Goodall) I can figure out a way to help J tell me what it is that bothers him so much in the early morning hours that he feels he has to act out.  Maybe what I need to do is create a new schedule for him in his mind, re-structure his way of looking at the school day and what’s supposed to happen there?

There are times when I wish I could be a fly on the wall.  Those times usually come when I hear J has been acting uncharacteristically at school, and I’m left pondering whether the “uncharacteristic” behavior is here, at home.  Maybe J is the way he is “there” and not “here?”  Maybe they get the genuine article and we get the nice, reasonable facsimile?  While I wonder about this, I can’t quite believe it…the degree of intention that would have to go into maintaining this illusion sounds exhausting.  And while I know that J can think about certain actions and realize that they are to his advantage, there really isn’t any malice in him; this, of course, would mean that J doesn’t have it in him to say “I’ll be nice at home because then they can worry about what I do at school.”  The thing is that J hates the attention he gets from us when we hear that he’s been acting out at school; he is self-conscious about being told “what happened at school?  Why were you upset?,” but he loves the attention of getting an ice bag if he has bumped his head a little too hard.

Maybe J is outgrowing school.  Maybe J feels that it’s all too childish for him.  Why, then, does he leap out of bed and bounce out the door to go to school in the mornings?  Is it wishful thinking on his part that he will have fun and do something that satisfies him?  Is it that he finds me, us, home incredibly dull?  Is it that he LOVES that routine, but now dislikes its minutiae?  Or, worse yet, he looks forward to the anxiety that he can cause over there?  As I said, J can think things through, but there’s no malice in him so I doubt that he kicks the covers off and thinks to himself “ah, what horrible stress can I rain down on the poor minions that serve me at school?????”  No…that doesn’t quite seem possible, does it?  J is no Saruman, that’s for sure…

Maybe what is required is a fresh look.  Erase all that has been worrying us, and tackle the issue from a fresh perspective.  Nine days ought to do it, don’t you think?  Nine days of trying to convince J (as one does with one’s children) that there’s no wrong or right answer to the question “can you tell me what’s bothering you?”  We know J listens, but we also know that J doesn’t always like to tell us things.  We know this is, in part, because he’s a teenager and teenagers are inscrutable; we also understand that Autism plays a part in all that impedes his progress in spilling the beans on his worries.  J lives in his head a lot, and sometimes he is more willing to talk than others…mostly through his music and the way he reacts to it.  I hope, during the course of this Thanksgiving Break, to find a way to get him to talk…

I guess I get to be the Orc then…

 

 

This is Autism

Please read…it’s totally worth your while.

that cynking feeling

I couldn’t finish reading it.

I know it is dangerous to rely on other people for information, especially if I am going to form an opinion or have an emotional response to that information. The source document was readily available, so I had no excuse for not reading it myself. In fact, its widespread distribution was one of its disturbing aspects.

Yet I only read other writers’ responses. The posts attacking the “Call to Action” linked to the statement, but I could not bring myself to read all the words once I clicked through.

It’s been refreshing to see autism advocates and parents united against the statement by Autism Speaks co-founder Suzanne Wright. That’s important, since Autism Speaks has access to decision-makers and the money to further its agenda. Theirs was the first website I was referred to when a doctor suggested that Philip might be autistic. I’m not the…

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An excursion of sorts…

This morning J and I made our way to the doctor’s office for his initial check-up with the new primary care physician.  Last night suspicion that today was not quite a holiday arose in J’s mind; I know this because, in spite of having looked at the PECS board all weekend and seeing that innocuous activities had been posted in lieu of the BUS and BACKPACK, J asked -no less than 29 times- if we were making COFFEE in the morning.  While already upstairs, he asked for a book.  After reading the book, he asked about COFFEE, MILK and HOME again.  I reassured him that we would be home, but I had to skip out of the room before he added more nouns to his line of questioning.

When I finally asked him, at exactly 8:10 a.m., to get dressed, J looked at me with an expression that said “I KNEW IT!!!!!!  You’ve TRICKED me!!!!!!!!!”  He gave in; he dressed for our outing and calmly walked to the clubhouse so we could wait for our cab.  The driver, when he saw J’s impressive dimensions, said he had to sit up front.  J realized that this man was not particularly thrilled to have him in his vehicle because the man flinched when J climbed on and the shock absorbers absorbed the shock.  Our son being as perceptive as we all know he is, the rest of the drive to the doctor’s office was peppered with “SAY AAAAAH!” spoken quite clearly while turning his head to the driver.  The man couldn’t lean farther out his window enough…for a moment I thought he’d end up driving with only one leg and one arm inside the cab.

The man wasn’t so much “mean” as horribly uncomfortable with the large, imposing, sweet-faced dude sitting next to him.  That we sat in traffic and he had to hear “SAY AAAAAH!” while watching cars slowly (painfully slowly) trickle past the green light didn’t help matters.  When we got out, J recognized this particular building as the one where he’s been to the dentist, so he wasn’t thrilled about getting out there, but he graciously said THANK YOU to the cab driver.  Me?  I got the stink-eye from the kid.  I had to make sure that I used the entrance farthest from the door to the dental surgery, and that I steered him directly towards the Family Medicine Practice.  Until we passed the portion of hallway shared by the Dental Clinic, the Dental Surgery and the entrance to Family Medicine, J was walking so fast that I thought he’d crash through the one set of doors that was closed rather than use the other set that was open.

The vastness of the waiting room and the complete absence of small children soothed him immediately.  Once we signed in and found a place to sit, he discreetly asked me if we were going to see the DENTIST.  I told him NO, this time we were here for the DOCTOR.  His fingers found the DOCTOR’S OFFICE folder in his Proloquo2Go, and he listed all the things he was going to have done: CHECK BLOOD PRESSURE, CHECK WEIGHT, CHECK TEMPERATURE, CHECK HEIGHT, LISTEN TO HEART, LISTEN TO LUNGS.  I pointed out that he was also getting his flu shot, and he took this in stride.  At least, he must’ve been thinking, the only child wailing and complaining will be me.  The nurses were very helpful and he behaved beautifully.  His blood pressure was better than I expect, but high nonetheless.  His body has to work very hard with all that weight on it, and that was part of the reason we were there today: his weight.

The psychiatrist had suggested we consult his doctor about putting J on Metformin to assist weight-loss.  We spent the past week reading about this, and we reached the same conclusion the doctor reached: if the blood work doesn’t indicate that J is diabetic (which she didn’t seem convinced of) then this particular med won’t do the trick.  We’ll know for sure after his lab work on Saturday morning (because what better time to run out of the house with a child that’s been fasting than a Saturday morning!!!) and the follow-up visit next Wednesday.  J, it seems, is as healthy as we think he is, but his body has the challenge of extra weight foisted upon it by using the Risperdal which, of course, comes into play because of the behavioral issues caused by the anxiety that stems from his Autism.  So J’s only health problem, in a nutshell, is his Autism.  Not bad, I’d say…not bad at all.  That is: it could be SO MUCH worse!!!

Look, I’ll be honest with you: J is “fat.”  J’s carrying around 285 pounds (about 130 kg) on his 5′ 10″ (1.7 meter) frame.  That’s a LOT!  Yes!  But…according to certain calculations (height and wrist circumference) and the fact that J is male, the frame that carries his body is LARGE.  J IS imposing, no doubt about that, but he’s also basically big no matter which angle you look at him from, and the bulk that worries doctors, cab drivers and parents alike is in his abdominal area.  The rest of J is absolutely and completely proportionate.  Yes, his BMI is off the charts, people, but it’s being measured based on height and weight, and the fact that he is male…and a good part of his weight comes from those large, heavy, solid bones of his.

I’m not trying to minimize the issue here.  J needs to lose weight, BUT…

I told the doctor today, and I meant this from the bottom of my heart, J will never have that lanky, lean, long, athletic frame that Michael Phelps has.  Not only has he not worked at being long and lean, he’s also not genetically coded for it.  If J loses weight, even if it’s a significant amount of weight loss achieved, he will still be a Big Guy.  The question here is not to reduce J’s size, but to reduce his health risks and his waistband…that’s not size, people; that’s volume.  J’s frame is meant to hold those big hands, impressive legs, stout body.  Unless there is a chronic medical condition requiring the use of the Metformin, well, it ain’t going to happen.  We held out on medicating him with the Risperdal until he ACTUALLY needed it, not because it benefited US.  We will hold out on medicating his weight…we can find other ways to do this, even if it requires a complete overhaul and re-education about food for an entire household.

We left the doctor’s office in a good mood, buffeted by the strong breezes that made us huddle together as we waited for the cab.  I’d brought with me Mouse Soup, and we stood under a pergola, me reading out loud (much to the amusement of passersby) and J smiling and filling in the parts of the story where I paused.  On the way back, our cab driver was much more comfortable around J.  He asked where we were going and, once we started moving in that direction, J -who sat next to him on the front- tapped him on the shoulder and motioned to the radio.  “You want music???”  The driver fiddled with the knobs and waited until J motioned for him to stop at one particular station.  “You like that one???”  It was a short drive home.  No traffic.  No anxiety.  No “SAY AAAAAH!”  Just HOME, HOME, HOME.  And THANK YOU when J stepped off the cab.

We’ll figure this out…one thing goes wrong, and another is bound to follow, and then another, but…something will go right…here or there or further down…we’ll figure this out.

 

 

J’s homing device points to Christmas…

The degree of joy displayed by J as he walked into Target, Target, Target, Target, Target, Target last night was impressive.  Without so much as a nudge from either Dada or myself, the kid sped through the store and stopped at a) the Christmas movie display, b) the Christmas CD display, c) the Christmas decorations section, d) all of the above…repeatedly.  It was, my friends, as if he had been snared by a time continuum loop and couldn’t extricate himself from all things HOLIDAYS!!!!!!!!!

Not only was he smiling from ear to ear, J was skipping and breaking into song.  Yeah…it was that much joy!

We came home with a Winnie-the-Pooh Christmas DVD and the soundtrack to Rudolph the Red-Nosed Reindeer, and there wasn’t a single aisle of Holiday Ornaments of non-denominational, Hanukkah and Christian persuasion that J didn’t linger over for prolonged periods of time…repeatedly.

Mind you, we don’t start the Twelve Days until the 13th of December, and the only reason a tree is entering this house before that day is because the 13th falls on a Friday, but J is READY!!!!!!!

I’m done with Twelve Days’ shopping, and Dada says he’s halfway there.  TGG, of course, has been to busy to even start, but I’m sure as Thanksgiving gets closer panic will set in and he will start asking what we’d like to get as presents.  I have a dream: he will clean his room and keep it that way for a whole weekend…  I know, I know, I know…might as well as for a Dyson vacuum cleaner, a KitchenAid stand mixer, and Russell Crowe, right?

J is in charge of “stucking stoffers” this year.  Of course, I will get his because it’s not fair to charge him with filling his own “stucking,” but everyone else will get whatever strikes his fancy.  I’m picturing a slew of things HE wants that we can then tell him “hey, I’m not really going to use this so would you…” and swiiiiip!  Out of our hands it goes.  Love and joy come to you…and whatever wassail is, too.

This week we had snow, so J switched his footwear to boots, and he also started walking in that overly cautious way that tells me he remembers all the near-slips and full-falls we had last winter.  On Wednesday he came home with a slight limp that made me wonder if his shoes were uncomfortable (they aren’t,) or if he’d fallen (he didn’t,) and which required a thorough inspection, extensive fawning-over, and Tiger Balm applied by every single non-feline member of the household.  When asked about this J simply stated, via his Proloquo, FOOT HURT HEEL A LITTLE PAIN.  When asked how it happened he stated, quite evasively, I NEED A HUG.  By Thursday it became a well-known fact that, when asked to not hit his head, he now stomps his foot on the floor.  By Friday this had stopped because, I am assuming, he got wind of the fact that all sympathy was now tempered by the knowledge that he’s responsible for FOOT HURT HEEL A LITTLE PAIN.  The limping has stopped, recurring only when he is asked to help with a chore that requires standing.  How utterly convenient!

Today and tomorrow the weather is supposed to stay warm, and we hope to enjoy it.  This morning I made J limp his way through sweeping the garage.  When he was done, thankfully, he recovered in spite of the fact that I remained unmoved by his pointing to his foot, saying BOTHERING and sighing loudly.  I know: I’m a horrible parent!

On Monday we are going to meet J’s new primary care physician.  As I mentioned before, I’ve switched him from the pediatric office to the family medicine practice because, well, he was the only person in the pediatric office with a goatee and mustache who was not part of the medical staff.  I’ve opted to keep him home that day so we can go to the lab if the doctor requests any tests, and then J can come home and bemoan his fate (and my cruelty) to his heart’s content while in the comfort of his TV room.  The rest of the week, I’m sure, will fly by because it’s the week before Thanksgiving and, as you can all imagine, I have to get ready for the week-long Thanksgiving Break which involves significant amounts of cooking as well as J at home…

But things are marching along.  The year is reeling in and preparing to end in spite of our lack of desire to see it completely gone.  I lie: I think 2013 has proven a testy year for all of us.  Between teeth and too much work, and moving and TGG going back to school, and every other small thing that has cropped up (like J’s desire to be disruptive at school!!!,) I think we are ready to put this one in the history books, and move on.  There’s time left, though…and challenges ahead…and those are never easy, but we can’t skip the rough bits.  If J gets put on a med to help him lose weight or to control his blood pressure, that’s going to pose another small hurdle.  If we choose to reduce the med in December in spite of J’s continued obstreperous behavior at school, that’s going to pose a bigger hurdle.  Life is, after all, a marathon with hurdles…and the trick is to stay hydrated (seriously, you need to make sure you don’t dehydrate,) and to not quit…even if you slow down, and even if you see that the hurdles get closer, are higher, have puddles and angry tigers in the pit below them…

After all, Christmas is coming…J has welcomed it even if the rest of us are not yet ready.  And it’s not the presents he’s looking forward to…I think it’s the lights, and the music, and the time at home testing the patience of the lady with the hot-flashes…  What’s in wassail again?  And how much can one make at one time???  I might need a gallon…

Stuck at 29…

Throw the number 3 in front of any other number and J is stuck.  We are now breezing from 1 to 29…reach 30 and a blank look takes over.  I’ve tried working on enunciation, counting, writing, looking at the number for periods of time…nothing…30 is not happening for the time being.

I’m taking the tack that 29 is a big accomplishment nonetheless, so I’m going to be patient with thirty.  If it’s the “th” sound that’s tripping J up, we can find other ways to work on it: Thursday (he likes that one,) three and thirteen (he knows those quite well,) through and thing (those are found in many of his storybooks,) thimble (in his flashcards and my sewing box,) and thank you (which gets over used around here.)  If it’s the number he doesn’t like, I’ll have to find a way to make it worth his while since we can’t really skip every number in the 30 to 39 range simply because J doesn’t want to deal with them.

Today is a no-school day, and we are possibly getting snow tonight.  That might mean a snow-delay in the morning.  I’m preparing for that.  I’ve already made a PECS card for Snow Day, and am working on a 2-hour Delay one.  Last night, knowing that there was no school on his schedule board, J’s parting word as he climbed into bed was COFFEE.  He was as good as his offer…at six a.m. (thankfully not a moment sooner,) he stood in the hallway and announced he was heading to the kitchen to make the magic brew that means the day is starting.

Since there’s no rush today, I didn’t mind that he went to fill his snack box, but didn’t divvy up in serving sizes, and immediately wanted to get his movies and migrate to his TV room.  Eventually, as we took our first sip of coffee, J returned and asked for his box to be arranged so we gave him the green light to do it without any intervention from us.  This was an exercise in compromise on his part: most of the bigger-serving containers have been either left in someone’s break room, someone else’s house or are in use for leftovers, so J had to accept smaller containers and gauge exactly how much he could put into them without getting a cleared throat from across the room.  We never tell him it’s too much, we simply clear our throats and say “are you sure, sir, that the container will snap shut without breaking in the process?”  This morning J showed that he can arrange farfalle into a container in such a way that he only has to take out about ten of them to make it close properly.  This morning he also had to accept that there are only so many ways one can arrange mini-donuts in a container that will hold no more than four…and that that’s all he gets because that’s all that fits.  He didn’t ask for more containers, which is what we worried about when we simply sat and waited while sipping coffee.

For all his discontentment at school, we find that J is quite well-balanced at home.  Last night, for example, he impressed us quite a bit when he asked for Slinky.  Didn’t he just have Slinky in his hand, Dada asked.  I checked his TV room, where we’d been working on some crafts and giggling up a storm.  While working, I could’ve sworn that Slinky was parked on the Slinky Block that we’ve placed on J’s work table.  We moved the bean bag, the pillows, the blankets, searched every nook and cranny, checked the living room, the stairs in case he’d dropped it, his bedroom…all the while J waited patiently at the kitchen counter, holding his Daily Migration Basket with both hands and, from time to time, saying Slinky as if calling out to his friend.  We were baffled.  We couldn’t find Slinky and we had no idea where “he” could have gone to…and then we heard the clinking sound, and J’s happy cooing.  Slinky had spent the last few hours forgotten on the half-bath’s counter.  J had left it there when I sent him to wash his hands so he could help with the gnocchi for last night’s dinner.

And, there you have another little nugget of J-marvelousness: last night’s dinner.  At around 1 PM I asked J to help me season the whole chicken we were roasting last night.  With a great deal of alacrity, J put on his purple disposable gloves, grabbed and handful of the home-made seasoning and proceeded to lather it on the chicken.  He went into every cavity, under the skin, vigorously rubbing the concoction I’d mixed for the bird.  And he did it with such energy and enthusiasm that we had what we now call J’s Broken-Back Roasted Chicken.  The bird was able to lay flat even before I opted for butterflying it on account of its rickety condition.  I heard the snap, and I thought to myself “was that my knee???  Oh, Lord…I need to take my glucosamine!!!”  J held the chicken aloft, it’s spine pointing in three different directions, but thoroughly seasoned nonetheless.  It was tasty, and it cooked to perfection.  J was very proud of his contribution to the meal.

So we’ve been up since early, and we have a list of chores to complete throughout the day.  Later, before it gets colder or starts snowing, we will walk Queequeg to the trash bins and clear the garbage bags from the garage.  We’ll wash some clothes.  We’ll work on 1 through 29…and try to throw 30 in there.  We are going to make home-made tortillas for enchiladas.  We are going to do our yoga and do our run.  We are going to put together the pom-pom foxes we’ve been gluing together for the past few days, and start on a felt sign that has an owl on it.  We have yet to pick a story for this evening, but there’s still time…

It wouldn’t be hard for me to come up with a list of 30 things we can do today, but I’m going to be OK with 20 for a little while longer.  At least J is happy, you know.  At least we are working on something that he can use later…  At least we’re a little farther down the number line than we used to be, so we get 29 TARBET in a row…or 29 NOODLES and 29 SODA in a row…  I can live with that for now…I can wait for thirty.

 

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.