A one-man cult following…

It is inevitable.  Whenever J goes out shopping and there is a video department at the store, he goes looking for the same movies.  We recently did an inventory of all the movies in his binders, and his pattern is pretty consistent.  He loves Alice in Wonderland, A Bug’s Life, The Brave Little Toaster, The Great Mouse Detective

No sooner do any of these get the smallest scratch that J goes and replaces them.  He doesn’t jettison the scratched one.  He keeps it much like Beth March does old dolls in Little Women.  The movie is scratched, split, cracked, slightly bruised…it doesn’t matter.  J puts it where it used to be stored before its accident, misfortune, illness, infirmity, and gets a new one to use in its place.

This, I have to wholeheartedly admit, is one of his most irritating habits.  We don’t get it.  We know it’s part of how his brain works, but it irritates us nonetheless.  We play along.  We replace the movie.  From time to time we make a concerted effort to persuade him to toss out the broken, split, bruised, scratched, marred one.  From time to time, very rarely…once in the bluest of blue moons, he plays along and says goodbye to an old, infirm friend.

We’ve gone through this with everything: Beauty and the Beast, A Charlie Brown Christmas, We’re Back! A Dinosaur Story, every single Toy Story movie, every single The Land Before Time movie (especially The Great Valley Adventure because he loves The Roches’ songs), and so on and so forth.

However, from among these, there is one movie that is especially singled out for replacement even when replacement is unnecessary…

Lord Jesus help us, we buy FernGully: The Last Rain Forest every single time we find it at the store.

It has become, by now, a running joke in our little household that Ray Liotta’s voice can be heard whispering “if you stock it, he will buy it!!!!”  We are single-handedly feeding the vicious cycle that is a store’s inventory: go through the list, mark what you have and what has sold, and if that ONE COPY of that ONE MOVIE sold, restock it.

We have considered when going shopping at stores that stock this DVD, sending a search party ahead to locate the ONE COPY and somehow hide it.  Our recon missions might, however, seem suspicious to Loss Prevention and we might end up getting pulled into a back office to explain away our particular situation.  The thought of this is not particularly enjoyable: you see, sir, our son…well, he’s I’d guess you would call it obsessed????  He ALWAYS buys FernGully and if you look at your recent inventory lists you will see that it gets consistently restocked even though it’s not one of the most popular movies made in 1991…that honor would go to Aladdin…which he also buys as frequently as he can…if you’d like to come to our house and look at his embarrassment of riches when it comes to movies you would understand that we were not trying to ABSCOND with FernGully, but rather were attempting to NOT have to BUY it AGAIN????

There are things that are hard to explain, and this particular obsession is one of them.  Why FernGully?  At $4.99 a pop (on average) it’s not a huge expense, but at maybe 15 copies by now, it’s a ludicrous one.  All the other movies cost more, and we try to explain to him that he doesn’t need another copy.  There are some movies that create a true crisis when they do crack, split, get bruised, won’t play properly because they are scuffed…  Those movies we have backups for, and we are unrepentant about this.

The list of classics that cannot possibly be out of circulation because they cause him deep distress are Melody Time, Make Mine Music, The Three Caballeros, Saludos, Amigos!, Ichabod and Mr. Toad, Fun and Fancy Free and anything that has Johnny Appleseed in it…  Those I have a secret stash of, and I am not ashamed to admit it.  A few weeks ago his Walt Disney’s Timeless Tales Volume 2 wouldn’t play and I, while J looked over my shoulder and breathed anxiously into my ear, had to search high and low on Amazon until I found it…used…for about $25.  Dear reader, I bought it…I would do it again, too.

If you could have witnessed the look of relief and peace that took over J’s expression when the package arrived, and how happy he was when he sat down to watch The Country Cousin over and over again for the next couple of hours, you would understand why I cave…  These are, we figure, his friends and companions, and while he has a vast selection of movies, there are some of those where his nearest, dearest, most trusted and most soothing friends and companions can be found.

The real world is ready and available to J, and he partakes of its joys and activities as often as he is comfortable.  Last Saturday, for example, he went to lunch with us at his favorite French restaurant here in town.  We went early and left walking in the direction opposite to the Christmas tree lighting event taking place at the shopping mall.  We knew J wanted an outing, and we knew the tree lighting thing would be too much.  J was very happy and enjoyed his meal greatly, and then he was ready to come home.

J likes going to the Mexican bakery so on the way home we stopped there.  The parking lot was full of vehicles, and J decided he didn’t want to get out.  I could have said “you MADE us come here”, but instead I said, “wait with Dada, and I’ll be right back.”  I came back to the car with a bottle of Mexican Coca-Cola and his favorite bread to last him throughout the week.  He was happy, and he was ready to come home.

We adjust.  We tweak.  We accept.  We move forward.

Every time we go to the store and buy FernGully (or The Brave Little Toaster) the cashier says “I used to LOVE this movie when I was younger!!!  I had it on VHS and I watched it so much it broke!!!”  I am always tempted to say “you should buy it on DVD!  Tell your nearest and dearest!  Tweet to your friends and contemporaries!  We BEG you!!!”  I never do.  We’ve got a one-man cult following going.  Why mess with a good thing?

Once in a while, a very small royalty check arrives at the offices of whatever representatives the players in this movie have.  They look at the meager amount that its made for -or maybe they just wait until it reaches a certain number before they hand it out to them…who knows?- and they ask themselves “FernGully?  Who could possibly be buying this movie????”

Call it our (teeny-tiny, extremely) little gift to them.  A little pixy dust in royalties.  We just hope they never think “you know, this thing is SELLING!  Maybe we should do a fan convention or something of the sort?”  There J would stand…alone in a crowd that suddenly remembered they love this movie and don’t own it.  He’d be overwhelmed by them, and we’d have to leave while they surge forward to shake the hands of Samantha Mathis, Christian Slater, Cheech AND Chong, Tone Loc, Tim Curry and representatives from the estate of the late, great Robin Williams…

Of all the movies in the world, J’s hyperfocused on FernGully.

Go figure!




Carpe whatever strikes your fancy!

Yesterday we took J to the movie theater to watch one of his favorite movies on the big screen for the first (and quite possibly only) time.  I don’t know if you are familiar with Turner Classic Movies’ screenings of movie classics through Fathom Events, but if you are not you should check it out.  Granted, it’s not everyone’s cup of tea, but you might find something to interest you.

We have, so far, watched The Maltese Falcon and The King and I, and J got to experience Singin’ In the Rain in all its full-color, big-screen glory yesterday.  We timed our arrival quite well, and were pleased to see that there were quite a few people there.  Carousel had been removed from the list because, I suppose, not a lot of people pre-bought tickets or showed interest.  I was bummed because I wanted to take J to that one, too.

It is always fun to watch J having fun.  The moment he saw the opening sequence he smiled, but by the time Make ‘Em Laugh rolled around he was bouncing  in his seat and grinning from ear to ear.  His most favorite number (Good Morning) made him positively giddy.

Today he is sitting in his TV room and re-watching the movie with a smile that reminds me of Rex saying in Toy Story 2 “I LIVED IT!!!!”

Friday night was rough.  It was more about J wanting to impose his will than anything else.  My hot flashes didn’t help.  Dada’s work-related stress doesn’t help either.  We all know that it’s not good to “cross the streams” (to quote another big-screen experience J loved: Ghostbusters) but it’s inevitable some times.

Upheaval has come to us without us inviting it in, and we have to deal…there’s no other option.  How gracefully we’ll manage it is up in the air.  With TGG’s baby about to be born any day now things get a little testier still.  Any time the phone rings we wonder if that’s what the call is about.  More often than not it’s someone asking if we want to give money to charity (some of very suspect provenance,) and other times it’s “service calls for our Windows operating system.”  I recently replied to “this is about your Windows,” with “they’re ok as-is…no use giving them a good cleaning until spring.”  The caller was baffled.  Also baffled was the one who called to tell me “I am with senior services,” and got an earful in return.  (For the record: not technically a senior yet, but I still don’t like being rudely awakened by the phone when I’ve dozed off on the couch during a peaceful moment when J doesn’t demand my attention.  That is “Autism-mom random miraculous snoozing” not a “senior” nap.)

The med is doing what is expected of it (cleaning out the cobwebs that were blocking our path to helping J,) and we are trying to do what is expected of us (helping J work through the things that hinder him.)  On the plus side: SIB is at its lowest rate since autumn; on the minus side: that belly is getting bigger in spite of our best intentions and efforts.  No, the pill doesn’t make him fat, but it increases his appetite and sort of slows down his metabolism.  He has gained weight, but we are still working on keeping this particular strain at a minimum.  He exercises regularly, eats his veggies, controls his portions…it’s going to take a great deal of effort and determination, but until such a time as we can take the med away again, we will have this on our plate…

I am happy to report that yesterday morning I managed to get him to keep his bandaids and brace off for over an hour.  He helped make breakfast, and then waited until I called him to come have them redone.  It is becoming an easier thing to do, parting him from those comfort objects, but we still have a long, long way to go to get back to where we were before.

But we’re going with the whole carpe whatever thing.  We cannot just wait until the next good opportunity for anything rolls around.  We need to jump on the bandwagon of whatever degree of progress, calm, fun, happiness is passing by at the moment…

Yes, yes, La La Land is a hit, and it sounds like fun, but Singin’ In the Rain was showing on the big screen where we were and none of us had seen it before.  La La Land was showing, and the theaters were full…but it will be there next Sunday, and -quite possibly- the Sunday after that one, and the one after that…  It was time to carpe…and the smile on J’s face said that carpe was the verb to go with then and there…  In sixty-five years maybe La La Land will be to some kid what Singin’ In the Rain is to J now…and I hope his parents carpe like we carpe-ed yesterday.  Because that moment of happiness has made for a relaxed J today, and that lifts fog and it makes it easier to help him help himself.

So carpe away, my friends…if it helps that is just awesome!



Day Three of the Big Chill…

Beware warm January trends that require no jacket, and give you the impression that this winter will be a piece of cake.  Fruit cake…heavy, dense, impossible to digest, best used as a doorstop fruitcake is what you’ll probably get.  I speak from experience…

I don’t know how many times I overheard Dada saying “how about that?!  Not a flake of snow all December!  It’s been downright warm compared to last winter!”  If there is one thing I’ve learned over years of being with this man is that he SHOULD NOT be allowed to talk about the weather.  Every single time he comments on how it’s too warm, too dry, unusual for the time of year, BOOM!  We get a triple-dose of whatever should be expected, and the weather forecast turns into an exercise in grotesque hyperbole.

On Tuesday morning we got Kierkegaard’s call and school was delayed for two hours, and then canceled.  Tuesday evening we got the call delaying school for two hours, and at six-thirty a.m. yesterday it was canceled.  Last night we got a THREE hour delay.  We all exchanged looks and said “that’s a closing waiting to happen.”  This morning, with the wind howling and the forecast calling for subzero temps, we looked at the map our local weather guy puts up with color-coded closings and delays.  Amid a sea of red, indicating school districts that closed their operations for the day, two or three yellow areas indicated hold-outs clinging to their 2-hour delays.  We couldn’t help but wonder if superintendents sit watching the screen to see who will be next to cave, and who will be the last superintendent standing.  Do they give out awards at the end of the school year?  Judging by the stubbornness that leads to a three-hour delay on a morning when the temperatures are expected to hit -20 with the wind chill, one would suspect this is a “thing” among school district heads.

J is taking the whole thing in stride.  I think last year we experienced enough school closures to teach him that this is par for the course where we live.  He asks for his Bus Song, but he can tell when we’re singing half-heartedly, and we observes who’s calling on the phone’s Caller ID, and our movements around the schedule board.  With a sigh of acceptance, J moves to gather laundry, take out puzzles, and line up chores we can do…if that’s not maturity, I don’t know what it is.

And, speaking of maturity, tomorrow is going to the psychiatrist day and we’re talking about reducing J’s med one more time.  I think we’re ready.  We will have, of course, a few days of rough-patch behavior, but we don’t expect (fingers crossed, knocking on not-compressed but ACTUAL wood, doing the sign of the cross, muttering a fervent prayer and wishing on a star) any difficulties aside from the usual “why is my body chemistry slightly off????”  I’ve read the notes of our previous forays into reducing the Risperdal, and I’m confident that we’ll do well…

(Let those not be famous last words, please…)

The truth is that J is maturing, and that it’s a joy to witness this.  It’s also true that I am grateful that J is becoming more and more his own person; as I age, a little of the pressure is taken off me and he takes control of more of the things he wants and needs.  At the same time, some of the feelings of “I could be doing more” return.  I think every parent experiences these feelings, and I think parents of autistic individuals know these feelings all too well.  I know J likes being by himself; it’s easy for him to find entertainment, and he relishes being so self-contained.  We all do our best to encourage him to spend time with us.  I know that J is ready for “togetherness time” when he shows up offering his DVD of Daddy Long Legs, and TGG has encouraged him to do the same with Danny Kaye’s Hans Christian Andersen.

A few mornings ago, TGG saw a bit of Hans Christian Andersen on TV while he had his breakfast before going to work, and I told him that I’d bought it for J for Twelve Days.  TGG, of course, acted as if it would be a supreme chore to sit through the whole movie, and dragged his feet when J took it out to play.  An hour later I walked into the TV room to find the boys cuddled under an electric blanket and happily watching the movie.  I brought a bowl of popcorn and they looked like the two little boys who used to watch Toy Story together so many years ago…and then J kicked me out of the room because, well, I’m mom, and mom isn’t allowed to interfere during “togetherness time” between the brothers…

For Twelve Days, TGG got J a Five Guys gift card, and J was over the moon with joy at being able to eat there (because he loves the food and the music they play,) and because TGG explained that they’d be using the card together.  On the Sunday after Christmas, J climbed the stairs to TGG’s room and announced that they were going to lunch.  This made us all laugh because it was totally spontaneous.  The following Saturday the same thing happened.  TGG says that not only is J well-known among the employees, but he also has a favorite spot from which to watch the food being prepared.  Once they have their order, J chooses a table and they eat and hang out together.  It’s nice to know they enjoy each other’s company, but can function individually the rest of the time.

In other news, we’re considering the possibility of traveling with J to Puerto Rico.  I have to visit my parents, and this requires going by plane.  J hasn’t been on a plane since 1999.  The world (and security measures) have altered a great deal since then.  The eternal quandary of how J will deal with a situation that is run-of-the-mill for others is always in play, but…we’ll see…

Before any of that, of course, we reduce the med…again.  We will brave the cold, the mild anxiety of being in the doctor’s office, and we’ll see what happens next…

Stay tuned…


The Dawning of the Age of Chester the XXXI…

Every Thanksgiving turkey is called Chester.  This goes back to 1983 and my first maiden voyage cooking Thanksgiving dinner.  I spent most of that day on the phone with my cousin (who is TGG’s godmother) consulting books, comparing notes and hoping we didn’t totally botch our families’ respective holiday meals.  This year we’ve been messaging back and forth discussing the weather and comparing notes on what our side dishes will be…  We’ve come a long way.

I can announce, quite proudly, that J has become a sous chef extraordinaire; he has made excellent work of chopping vegetables for the stuffing, and he took command of the whole slicing, cubing, seasoning, and toasting the bread for the stuffing…  I had to demonstrate everything from the other side of the counter (since he is left-handed,) but he very aptly did the rest with me keeping an eye on the sharp knives and the ten fingers I wanted him to still have when the work was done.

Little by little (because lot by lot doesn’t quite feel the same) we’ve been cleaning, prepping and helping each other all day.  When it started snowing, J took a break from the task he was performing to stand next to me and announce SNOW with a mixture of “really?” and “oh, Christmas.”  Out came the Christmas music piping all over the kitchen level of our townhouse, and J kept working while humming along to the tunes.

It is almost a year to the day since J’s then-doctor (who has since finished her residency and moved to a different area of the state to set up her practice) discussed with us changing J’s eating habits to follow the Mediterranean Diet.  I did my homework, and I took some chances.  A year later, J is approximately fifty pounds lighter, and a whole lot healthier.

We started out by hiding the changes from him, and now we can cook and mix vegetables into his food without so much as him batting an eyelash.  The kid (yes, I know he’s almost 20, but he’s always going to be “the kid” around these parts) eats SOUP…home-made tomato soup!  He eats 1/100th of the cheese he used to eat, and he loves his hummus and vegetable chips.  If there was a time when “we’re out of Ramen noodles” was a crisis in this household, now we are sent into a panic when we’re running low on yogurt and home-made pear chips.  Size 44 pants make J look like he rummaged through someone else’s closet to find something to wear.  His XXL t-shirts are loose to the point of looking like we made a mistake reading the label at the store.

A lot has changed in a year.  A lot.  We now have a grandchild, even if we will never meet him.  We now have a smaller, more functional autistic son.  TGG is moving out, and we get another room to use for another purpose.  We have lost a beloved father, and another father is in poorer health than he was last year at this time.  In the middle of Life, because that’s what the ups and downs are, we are grateful that we are together, even if we have the occasional argument about, well, Life and its peculiarities, or -more accurately- our peculiarities as humans performing the choreography of living without quite having learned it beforehand.

In a rocky year, we’ve managed to persevere, and for that we have to be grateful.  We don’t always see it, but…there you have it.  It’s not just the short and illustrious reign of Chester the XXXI we are concerning ourselves with tomorrow, but rather that we’ve been around to see him and his predecessors, and we might be fortunate enough to see many of those who follow, too.

There will be no Black Friday shopping for us, but J does want to go to the movies for The Penguins of Madagascar.  We’ll leave The Imitation Game and The Theory of Everything for upcoming weekends when we need to get out of the house.  Friday will be the day we work on our stamping our parcel paper roll with Christmas motifs to wrap our gifts in for Twelve Days.  Sunday we’ll work on biscotti to pack for those little giveaway presents Dada takes to the office.  TGG has to start working on packing up to move, and J will have to start thinking of the reality of his brother not living here.

I mentioned this while we were vacuuming and airing out the top floor, and J opened his eyes so big that I almost felt bad about saying anything.  I made him sit on the bench in his room, and I explained that TGG won’t be too far away, and that it will be easier to see him here than when he was in Texas visiting my brother.  I didn’t promise, because I can’t and I shouldn’t, that he will see TGG every single day, but I did promise that we will show him where TGG is moving to this coming weekend.  The rest of the prep work, sadly, doesn’t fall on my shoulders; TGG will have to have an adult conversation with his brother and make a case for independence without making it sound like they’re never seeing each other again, and without making it seem like they will see each other like they do now.

We start climbing, then, the slippery slope of adjusting to a new household arrangement.  We spend the last official holiday as all residents of the same home, and we get ready for holiday plans being optional rather than required.  I can no longer say “Sunday dinner is at six-thirty on the dot and you WILL be here.”  I just can’t.  I can invite to dinner, and the invitation can be declined.  That’s something that all of us, especially J, have to get used to from here on end.

So we will make Chester the XXXI as memorable and delicious as we can, and we have the perfect sous chef to help us achieve our goal.

Summer vacation churns towards us…

The sleeplessness of Wednesday night/early Thursday morning did very little to improve my chances of getting caught up with life yesterday.  I, cowardly creature that I am, crawled back into bed at 8 a.m. and did my best to (fitfully) sleep until 11 a.m.  It did little to improve my demeanor…I was a useless, cranky woman for the rest of the day.  I would like to tell you that I know what kept me up all night, but the only thing my accusation-happy finger will point to is a laundry list of menopause symptoms.  I don’t recall any middle-of-the-night hot flashes for this particular incidence of sleeplessness, but I’ll go with it, if only because it conveniently takes care of “trying to figure out why.”

So today I am working quite enthusiastically to get ready for the looming reality of J’s constant presence at home.  (I know: how can I be working enthusiastically at it if I’m sitting here typing.  Well, I am…when I’m not typing.)  The patio is 100% ready for J; the pantry is full and organized; I have shelves of activities carefully arranged for easy access to one thing each day.  The powers that be in the entertainment industry have already provided us with the first 2 hour and 12 minute opportunity for J’s viewing pleasure: Star Trek Into Darkness is in theaters, and not a moment too soon.  Monsters University dangles happily ahead of us, something for the entire family to look forward to in June, and -provided with a nice enough incentive (like a pail of popcorn the size of his head)- J might sit through Iron Man 3 and Man of Steel.  No one in the household is particularly enthused about the last two, but we all know that summer movies are a good opportunity for J to go out and have fun in a place where the heat and humidity won’t affect him as much.  As a wise man (TGG) once said “if he sat through Space Chimps, he’ll sit through anything!”  I always remind TGG that, thanks to his childish insistence, I sat through Twister, Jurassic Park 2, Judge Dredd, Batman and Robin, Super Cop, Star Wars Episode I: The Phantom Menace and another slew of less-than-three-stars entertainment.  It wasn’t until the advent of Jack Black’s School of Rock in 2003 that we felt there was hope for us in taking pre-adolescent TGG to the movies.  The response to this is always “point well taken.

With J, of course, the story is a little different.  Pixar is our savior.  If there’s a Pixar movie coming out, we can breathe easy…we WILL be entertained.  That he has finally accepted such things as Anne Hathaway as Catwoman and Kirsten Stewart as Snow White as viable forms of movie-viewing fun make us happy.  I don’t however, see him wandering into Lars Von Trier or Richard Linklater territory.  If I never could persuade TGG to go to the movies with me for, say, Jamie Lee Curtis in Freaky Friday or Meryl Streep in Mamma Mia!, it is highly doubtful that J will join me in watching a marathon of Before Sunrise and Before Sunset ahead of going to the movies for Before Midnight.  I will be dragged along to Despicable Me 2 (which I don’t mind,) but I will have to negotiate heavily (and possibly offer TWO buckets of popcorn) for a trip to Austenland.  Ain’t it always the way????

I can’t complain, though.  I am feeling ready for summer.  (Famous last words???)  I have projects lined up, the garden is doing nicely, J’s apparently ready for this transition, and we’re going to get the Big Dental Procedure out of the way in a couple of weeks.  Barring anything disastrous, we’re in good shape.  After much careful thought, I’ve reached the (perhaps overly optimistic) conclusion that moving across the street won’t be too much of a problem.    The room-by-room approach seems to be the way to go, and I say this after having analyzed the situation from every possible angle and, yes, using props, charts, and worst-case scenarios.  It may seem like I’m jumping ahead of schedule with all this planning, but it’s already May 17th and the projected day for completion on the construction is August 15th.  So, basically, that’s how much time I have left before J goes back to school.  Seen in those terms, it’s an eternity, but in the context of moving a household across the street when there’s an autistic individual whose comfort, tranquility and well-being are involved, I’m kinda behind, aren’t I?

Tomorrow morning we will make the trek to Farmers’ Market.  After the first Saturday’s overwhelming canine attendance at 8:30, we have determined that 9:30 is the right time to take J.  We’ve been making progress accepting dogs as friendly creatures.  Please, feel free to imagine J as a one-man Bruce, Hammer and Chump from Finding Nemo and repeating “fish are friends, not food” in more of a “dogs are friends, they don’t consider me food” line.  I can feel him tensing up as we walk past dogs, but there’s no longer a frantic effort to scream and run away from them.  That is what I’d like to think of as maturity, and it makes me feel good.

J’s favorite bakery has closed down for good.  Our second stop tomorrow morning is a donut shop we’ve been trying to locate since we moved here nearly two years ago; someone finally gave Dada what they claim are sure-fire directions to this place, so we’ll see if we can find it…

Other than that, my friends, I can only say that this last weekend of the school year is gearing up to be as hectic and action-packed as we’ve come to expect of warm-weather weekends.  As much time as J wants to spend indoors in winter, as much time as he wants to spend outside when it stops being long-pants weather.  I can’t complain.  Summer is, after all, short for some things and long for others…might as well start enjoying it while we still are enthused about the whole gig, right???

In praise of The Twelve Days…

Today is the Eighth Day of Christmas.  I confess that this doesn’t really get old…you’d think we’d be tired of the trickling in of packages, of getting a gift per day.  It is, in fact, a very soothing way to handle the holidays…at least for US.  I don’t know how other people deal with Christmas morning, but we were usually a mess when it was done.  Brown paper bags that had been leftover from gift-wrapping were used for hyperventilating.  J would be prostrated for most of the day, and we were not in much better shape.  I think the idea of a day when the holidays reach a climax with a bounty of gifts piled willy-nilly under the tree while lights flash and everything is super-duper special is not conducive to Peace on Earth, Comfort and Joy or anything that we wanted to experience Christmas morning.

In a nutshell: Christmas morning and Autism can be a bad, bad, bad combo.  If you’ll notice, there are no Hallmark movies with this element thrown in for “conflict” and there are no major motion pictures in which an autistic individual walks into a room to be assailed by the trappings of Christmas…all at once.

On the 13th of December we take out our 12 Days board, and J knows that we’re in business.  The pattern for the next twelve nights is clear cut, and he knows where we’ll sit, what we’ll do and that we will all be noisy and laughing and taking pictures.  His is always the first present to be opened, and no, he’s not excused from the rest of the ritual.  We all sit politely (and noisily) to wait for our turn.  It doesn’t take more than fifteen minutes (on nights when the song is in its longer stages) and we all get to make eye contact, hug, kiss, interact, all while receiving a token of everyone else’s affection or sense of humor.

On the 24th of December, we finish this nightly ritual and the 12 Days board is left out where it can be seen to be complete and done, and on Christmas morning we each take our stocking (which hang on our bedroom doors) and retrieve whatever is in there.  Breakfast is another noisy family ritual, another Sunday event that falls on whatever day the 25th is.  J is fine with all this.  He gets one movie or book or toy or t-shirt at a time, and he doesn’t have to agonize over which one to enjoy right away.  If he gets a t-shirt (which he will tonight,) he can wear it right away (and he might,) or leave it ’til the next day.  If he gets a movie, he doesn’t have to go eenie-meenie-minee-mo, he can either watch it or put it aside.  I remember, as a kid, being torn over reading this or that book right away, or playing with this toy instead of that one.  While I could process that quite easily, for J (and other kids like him) it’s not as easy.

Someone asked me if I thought it was OK to get each person in the household 12 presents.  They actually went on to berate me for being “materialistic,” and giving my children the impression that “consumerism” was the purpose of Christmas.  I patiently told them to go home and count how many presents they had bought for family members, friends, co-workers and acquaintances, and to tally up how much that had cost them.  “Oh, well,’ came the response, “it’s only once a year!  And my husband’s business associates always give us things and we have to reciprocate.”


This is my humble opinion: I’d rather buy 12 presents for my immediate family than a pile of “token gifts” and “business gifts” for other people.  At the end of the day, because our Twelve Days are so meaningful to US and we take it as Family Time, we plan the gifts to please, tickle the funny bone, warm the heart, and not rip to shreds our already strained pockets.  J’s iPad and Proloquo2Go were the biggest investment we made for The Twelve Days this year, and that it has been worth every penny is the greatest understatement this year.  Everything else has been firmly planted in the realm of the financially modest.  This is the time of year when we say “I’ve been paying attention all along in spite of the fact that it looked like I was gnashing my teeth at the time.”

So far, Dada has received a Darth Vader light saber (bought by TGG because he IS their father,) and a light saber duel was conducted in the dining room.Darth and Luke

TGG received the latest (hardcover) installment of Captain Underpants, and -even at the age of 21- reacted with the same gusto and enthusiasm as he did when he was ten.  We could hear him laughing (sounding like he did at the age of ten) all the way downstairs.

J, aside from his iPad, has two more Wishbone DVDs that were met with the “I have to close my eyes while I smile because this is too cool to smile in any other way” smile.

I have books.  And movies.  Last night I watched The Best Exotic Marigold Hotel (starring my hero, Judi Dench) and I will wait until J goes back to school to watch Ninotchka and 84 Charing Cross Road, for one I laugh too loudly and for the other I need a whole box of Kleenex as the end approaches.  TGG gave me a rather large and fuzzy stuffed gorilla I HAD to name Francisco because anyone who’s seen Elf knows it’s a fun name to say.

As you can see, there is nothing “over the top” about our celebrations, and the emphasis is on making each person smile, whether over a family joke or an observation made over the course of the year.  We don’t wait until Christmas morning to pile our best intentions on top of each other and overwhelm J with them.  Looked at from a distance, yes, it seems like twelve items are a lot, but the truth of the matter is that each of us would get more than 12 presents if left to plan freely for a Christmas morning gift-opening extravaganza.  We’ve removed the “which package do I want to open first?  There are so MANY of them!  I’m freaking out!” factor from our holidays…  The same person who criticized the 12 gifts challenged our process by saying “isn’t the song one of these, two of that, three of the other, and so forth?  Why don’t you do it that way?”

At that point I just rolled my eyes.  I didn’t want to say “which part of J can’t handle over-stimulation don’t you get?  Which part of “this is a lifestyle choice” are you not comprehending?”  As she walked away she told me that I was condemning (yes, that was the word she used) TGG to instituting “unusual holiday traditions” for his children simply because I didn’t want to “tackle J’s challenge with Christmas morning” in the proper way.  That, I was informed, only teaches him that his family will adjust to him and his needs.

Sigh…these are the moments when the C-section scar itches.  Something inside me yells “DU-H!”

Of course we need to think of his needs!  Of course we have to work to preserve his peace of mind while teaching him to navigate the outside world!  That doesn’t mean we can’t, for our own sakes, make the holidays a little easier for someone who processes information differently.  That doesn’t mean that the Twelve Days aren’t (like goofy greeting cards with families wearing the same outfit, or whatever other quirks people consider “tradition”) part of our family’s identity.

J’s comfort is important to us.  Our comfort is important to us.  Our holidays are not about pleasing outsiders, but about showing affection, sense of humor and togetherness.  In a world as mixed up as the one we live in, and with a kid as interesting as ours is, that is the important thing.  We have faith that we will pull through all the crappy times, but we also have faith in each other…that we pick our battles when it comes to Christmas shouldn’t bother anyone.  It is, after all, a lifestyle choice attached to an extraordinary (although statistics wouldn’t call it that) circumstance called Autism.


Snow White and the J-man…

Early this morning, J insisted on several very specific things: that TGG’s car be parked in the garage and Dada’s car be left with easy access to the road, and that we not dilly-dally.  The board stated, quite clearly, that we had places to go and things to do.  This kid has a future as a tour guide, a drill instructor or a schedule compliance manager.  We made it to the Farmers’ Market before nine in the morning.  The only thing J didn’t like about our early arrival was the presence of the early-morning contingent of the Twilight Bark; dogs in every size and degree of furriness surrounded him…Indiana Jones took the wall-to-wall snakes in the Well of Souls with a little more composure.

We navigated.  We successfully navigated in spite of the sudden appearance, here and there, of canines of every size.  Oddly enough, it was the dachshund (low to the ground and concealed my a sea of human legs) that gave him most pause.  The West Highland Terrier startled J, but we found a safe and dog-less area where we could observe the “enemy” without a blind spot.

Our mission was accomplished: big, luscious, juicy organic tomatoes were purchased; Havarti was acquired (last week we’d been denied this pleasure by our late arrival,) and FINALLY a beekeeper was selling his wares.  A few more steps and we got bread and a cinnamon roll from the stand-alone bakery.  All this, thank you, before even nine-thirty in the morning.

The library was next.  The librarian now recognizes J and smiles at him quite kindly.  He seldom borrows anything, but he stands happily in front of the VHS tapes that he can’t watch at home, but which remind him of his youth.  I know…to us it was yesterday, to him it was many appliances (and much technology) ago.  As he approaches the desk at the end of our visit, he has the same happily nostalgic look that old men have when they run into the first pretty girl they kissed…there is no longing, but the memory still pleases them.

Cheese doesn’t wait patiently in the car so we drove home and dropped our purchases off.  The plan for the morning included the Farmers’ Market, the library, taking our recycling to the bins at the mall, going to the movies and then having some lunch.  Car loaded up with plastic and cardboard (which reduce our trash to virtually nothing!,) we headed out to the movies.  I had signed to J “Snow White” and he was excited at the prospect; the schedule, thank goodness, was being followed to the letter…

A voice floated from the backseat of the van, rising over the music being piped through the speakers.  “What did he say?,” my husband asked me.  It’s not that he doesn’t understand J; we have simply reached that age where our hearing isn’t what it used to be, especially when it has to compete with Pink Floyd.  The expanding hum of the music made me wonder if Id’ heard right, so I turned to J and asked: “what was that, J???”  GOING TO GET FOOD?????  He said that, yes, spontaneously and with the lilt of the question mark at the end.  J, sitting in the back of the van and aware of the general plan, had decided to float a change in order.

A parent who has never experienced the languor of an autistic child who seems uninvested in the world around him/her cannot possibly imagine how good that GOING TO GET FOOD????? felt.  It is inevitable that we will be humorous about it, that one of us will say “gee, J, it was so much easier to stick to a schedule when you didn’t say anything!”  The charm and novelty of J’s newfound desire to make himself heard and understood isn’t wearing off.  Sometimes we think it might, but, nah, not happening.  Rather than lunch, my friends, we stopped for breakfast, and J happily ordered a Number 3 with a soda, enthusiastically pointing to the Coca Cola sign.  Yes, we let him have his soda…he’s done for the day.  J then ate his biscuit sandwich with egg, cheese and bacon by deconstructing it and using a fork, that is a good day right there.

We went to the movies and watched Snow White and The Huntsman.  This is the first “grown-up” movie J has gone to see at the theater.  By “grown-up” I mean not animated in any way.  It is perfectly suited for his age group, but we’d never risked taking him for fear he would be bored and there would go the significant amount of money going to the movies means these days.  Even when the popcorn had been consumed (before we reached the half-way point in the movie,) J sat and watched.  He had smiled at the previews of Katy Perry’s concert movie; he had enjoyed the trailer for Pixar’s Brave.  When the movie started, J watched with a smile; perhaps it was Charlize Theron’s gorgeous face or perhaps it was Kristen Stewart beautiful eyes, but J was happy and interested.  He loved the dwarves…I think he recognized Bob Hoskins’ voice from Roger Rabbit because he sat up and squinted at the screen.  He loves the special effects.  He enjoyed the music.  We have a winner, ladies and gentlemen!!!!

Our trip to the movies was successful, and as we walked out of the theater J stood looking at Anne Hathaway’s Catwoman appreciatively.  “Oh, yeah, we’ll come to see that, J!,” Dada said.  Then my husband leaned over and said “do you think he now wonders when we’ll bring him to a movie with boobs in it???”   I couldn’t help laughing.  I’m sure the thought crossed J’s mind when Kristen Stewart’s dress drooped from her shoulders, and I could almost hear him thinking “turn around, turn around, turn around, please, please, please!!!!” when Charlize Theron took her robe off to walk into a tub.  Alas, he was foiled this time…but, like with any normal seventeen year-0ld, this state won’t last for long.

J is happy.  J has seen a whole new world open to him at the movie theater.  I could take him to see The Best Exotic Marigold Hotel, but I think that would ruin the experience for him…he’s not ready for movies about “old people,” he wants to watch what his friends at school, his age-group is watching.

TGG will be so relieved!  They can now go gaze lovingly at Anne Hathaway together.  And they can have some popcorn, too…one is never so grown-up that one can skip popcorn.