Off to a good start…

J’s happy mood is definitely contagious in spite of the dreariness of the weather.  He is in definite “vacation mode” and, when summoned to do chores, helps enough to fulfill an obligation but then laughs his way back to his room.  If he didn’t have such a sunny disposition as he leaves me mid-task I’d be very upset, but since I know he’s happily tucked in his room I’m ok with cleaning bathrooms by myself.

As J stepped off the bus yesterday, his aide handed me a bag and told me “it’s a bowl he made for you.”  Light as a feather, I assumed I was adding to my papier mâché collection and, although I was excited to see what he had made, I was not particularly careful transporting the bag home.  I was more concerned with the Easter eggs I was told were in his backpack.  (The smell of hard-boiled eggs was revolting to me when I was pregnant, and I avoid it like the plague…opening windows and airing out rooms when hard-boiled eggs are performing their strip tease is a must in this house.)

J removed his hat as soon as we got home.  Fifty minutes he went bareheaded as he had his snack, changed into his at-home grubbies and we put the hard-boiled eggs in the fridge.  The bowl remained wrapped in its protective shawl of two plastic bags and several layers of paper; it took us about twenty minutes to get to it…

What I had thought was papier mâché turned out to be pottery.  Beautiful pottery!  This, Dada said when he saw it last evening, was what the aide at school meant by “the bowl that, as J was painting it, he painted over her fingers because she was holding it.”  The color is absolutely gorgeous and the gloss is AMAZING!  Fired in a kiln, this bowl is a thing of beauty and we are madly in love with it…J is proud as punch, I must say, and loves the attention HIS handiwork is getting.

Spring Break has started on a high note.  I told TGG yesterday that I am saving J’s outing to the store for later in the week because I don’t want to run out of things to do too early.  The outing to the store will happen on a rainy day; while the sun is out, we’re heading to the great outdoors…at first for short hatless periods, by Sunday for longer periods.  A girl can dream, can’t she?

The only snag in the fabric of this plan is the leak in the laundry room’s ceiling.  How, you may ask yourselves (as we have,) can a basement-level laundry room have a significant leak in the ceiling?  Beats me!  We’ve been dealing with this problem since September (when we first experienced significant rainfall) and this morning we discovered a puddle that, we believe, resulted from last night’s rainstorm.  We took pictures and e-mailed them to the property manager’s office…this might mean a constant in-and-out of workers while J is holding court in the family room.  Oh, joy of joys!  Because the leak seems to run into the base of the light fixture, we are working with a floor lamp for now…or, rather, a desk lamp propped up on a barstool.  J thinks this is an unusual arrangement and I’ve explained to him that I’m not particularly happy with it either, but laundry waits for no leak.

TGG and Dada are out test-driving vehicles.  I am hoping TGG makes up his mind sooner rather than later because, quite frankly, our gas usage has significantly spiked since he’s been driving the family van.  Nothing checks gas usage like having to ALWAYS pay to fill the tank, and TGG is pretty good about chipping in, but he’s also very given to driving rather than riding the bus.  This is what comes from not having lived through the Carter administration and its long lines waiting to fill a gas tank.  (If that sounded a little like an old person talking about The Great Depression, my apologies…those gas lines are to us fortysomethings what The Great Depression was to  an older generation.)

The weather today is an echo of last night’s rain and thunder…it is a day to be indoors, cozying up to a book or a movie, drinking tea and napping.  None of these activities are in the cards for me, though.  I have bathrooms to attend to, and other assorted chores that cannot be put off ‘til tomorrow.  The neighbors’ cat needs looking after as they’ve gone away for a family trip until Monday.  I am not complaining…I am merely stating that cuddling up is not on the schedule for the daytime hours.

Hard as it is to believe, it is now the eve of April.  We have navigated Fall, Winter and now Spring…the trees turned blazing yellow and orange, stripped to the bare gray branches and are now sprouting green.  Where has the time gone?  Tomorrow morning we will be starting a new month, edging closer to summer and J’s next IEP where we will determine if he is going to summer school (pleasepleasepleaseplease) for four hours a day, four days a week.  We are edging closer to his next appointment with the psychiatrist and figuring out if we should go ahead with the proposed plan to cut his med in half.  The log I’ve been keeping has registered more “hatless time” than tantrums, attention-seeking behavior (which I still don’t know what it could be…don’t teenagers seek attention CONSTANTLY?) and crying spells.  One crying spell…that’s all  I have…on Thursday afternoon, for less than twenty minutes.  That’s not bad, is it?  More hatless time than “bad” time!


The rest of the house beckons.  I have toilets to clean, laundry to fold with the help of my lovely assistant, and I need to go look in on the fuzzball next door.  He is a lovely cat; quite large and distinguished, and the only problem we have in communicating (aside from his being a cat) is that his owners speak to him in Arabic so I will pat him on the head, scratch behind his ear, feed him and coo at him in Spanish…

In your -hopefully- big hands I put all my troubles, God…

Every morning a string of thoughts parades through my mind.  There is a cast of usual suspects among these thoughts: “morning already?????  I just fell asleep!!!,”  “memo to me: no dairy products after 8 PM,” “what day is it?  Please let it be Saturday…please, please, please!!!”  I try to throw “I put this day in your hands, God” in there every morning.  Some mornings I forget.

Lest you think I’m being absurdly religious on a Friday morning, allow me to tell you that this particular thought has little to do with religion: I am thinking about J’s Spring Break.  I have previously mentioned that I do believe in God, and in his sense of humor.  TGG is agnostic and we often have rather animated discussions about the subject; my husband quietly prays every night before he starts snoring vigorously.  J is the person closest to God that I have ever known, regardless of the fact that he has no clue about religion or faith.

TGG’s agnosticism harks back to the Eighth Grade when he had a Math test.  Yes.  TGG is agnostic because of Mathematics.  I was never mathematically inclined (as Mrs. Henning in the Second Grade informed me) and I think TGG has inherited my un-mathematical-ness (I KNOW it’s not a word…in the outside world.  In this house it’s a perfectly good word, thank you.)  Back in 2005 we waged massive battles to get TGG to actually do homework.  The kid is brilliant!  His IQ is high; his desire to use it to advantage is nil.  TGG is one of those people who is smarter than is good for him, and who make parents tear their hair out in frustration on account of their laziness.  For this one Math test (Algebra, perhaps?  I can’t remember,) Dada had sat with him going over the material; there was such a vast amount of frustration at the kitchen table that it’s a miracle every meal after that night didn’t turn sour by osmosis.

TGG failed that test.  He came home and announced he was angry at God for not answering his prayers to help him.  I replied, in my usual tart fashion, that goes answers prayers, not Math tests.  This I knew from experience.  If I’d spent as much time studying for Algebra, Trigonometry and Geometry as I did praying for divine intervention in helping me pass, I’d have had a better chance.  Instead of taking the “I’ll study more” tack, TGG decided to take the agnostic tack, and so we find ourselves (seven years later) still discussing God’s existence (or lack thereof) on a semi-regular basis.

I have my own logic for believing in God’s existence and, in my own informal way, I express my faith in his plan…and in his sense of humor.  Perhaps because I grew up in a very traditionally Catholic household and attended Catholic school through high school, I am knowledgeable enough to steer clear from the aspects of organized religion that are in conflict with my Humanities-based academic choices starting in 1982.

I don’t speak openly about my faith.  This is not because I am ashamed of it, but because people will then ask questions: which religion I profess?  Where do I worship?  Do I read the Bible?  How does my faith reflect my political views?  Do I think J’s autism is an act of God?  How do I reconcile my faith with J’s disability?  And, my personal favorite, am I worried about going to Hell?

I am a recovering Catholic.  Every Lent I fall off the wagon.  I am a big fan of the Virgin Mary, not because she was a virgin but because she was a mother, and she did make Jesus turn water into wine (ah, the power of mothers!)  I believe in God and his grace and sense of humor.  I think J is the way he is because it is the way he is, and if God willed my son’s situation for MY sake, I wish he’d left J out of it.  I believe that God has a plan for each of us, and if we are patient and we are willing to pay attention, we will reap the benefits and rewards of God’s plan when it’s our turn to do so…

Am I worried about going to Hell?  No.  I am worried about leaving Hell behind when I go; that is, I am worried about the pain and concern, the upheaval and mayhem that my parting from this world might cause others.  Last night I told my husband that I worry about the limited amount of towels we own.  “When I die, if you run out of clean towels and no one remembers to do laundry, you’ll end up drying yourself with toilet paper.  And what if you then run out of that?,” I said.  “Is that why we currently own about a hundred rolls of toilet paper?,” he asked.

I am heading into Spring Break by putting the whole matter of J’s hats and keeping him entertained in God’s hands.  (I can almost hear God using his best surfer-dude voice to say “so, what do you want me to do with this?” and laughing at me.)  This doesn’t mean I’m not going to put in the very same amount of effort I’ve been putting on phasing out the hats and keeping J engaged.  This doesn’t mean I’m throwing my hands up in the air and saying “ok, let’s do this!”  This means I hope God will lean his ear in my direction during this time and listen to all my complaining.

I don’t think I have as much faith in God as he has in me.  Why else would he entrust J to a person who didn’t learn to ride a bike until the age of ten?  (Really.  And don’t hold it against me…I was not very coordinated.)  Why else would he allow me to discover patience after spending a whole lifetime being impatient?

I hope my views are not terribly irreverent, leading all you faithful followers to abandon me in droves.  I’m just worried this morning.  I am armed with an egg timer and I have a week of teenaged J at home in my schedule.  What I used to solve swiftly with play-doh and jigsaw puzzles has become more complex, and I am ill-prepared for the coming week.

Here I go…I’m going to do my best to be a good, kind, and competent mother…and not lose my marbles in the process.

Sign language…of a sort…

We are a hand-gesture family.  We use ASL to communicate with J and we gesture broadly with our hands.  That part is cultural…it is often said that if Puerto Ricans sit on their hands they won’t be able to speak freely.  I don’t know how true that is of just Puerto Ricans; I’ve heard the same said about Hispanics in general and also of Italians.  The truth of the matter is we flap our hands around a lot, sometimes to “say” something and sometimes just to emphasize something.  The latest addition to our hand-gesture vocabulary is the motion that imitates J’s scrum cap strap being removed.  

Today this hand gesture was used spontaneously.

It wasn’t produced by me.

Yes, ladies and gentlemen, J himself used the scrum-cap-strap-being-removed gesture.  He did this after we got home from the bus.  I was distracted sorting mail and hanging my jacket in the closet, and I turned around to find J looking intently at me.  His hand, swiftly and intentionally, made the gesture.  I almost cried with joy.

Taking the scrum cap and Rasta hat as soon as we arrive home from the bus is now part of his everyday routine.  Glory be!!!!

Phasing out the headgear is becoming easier, or at least it seems that way.  As usual, I am waiting for the other shoe to drop.  I know that being alert to the possibility of impending doom is not healthy; anxiety is a silent killer, they say, but I don’t see it so much as anxiety as I do preparedness.  I read cues in the way J moves and sounds, and I try to come up with ways to alleviate his concerns sooner rather than later.

You may call BS on this if you’d like.  I know I am anxious a great deal of the time, but I try to face it with a shrug of my shoulder.  What was it that Shakespeare wrote about Beatrice in Much Ado About Nothing’s Act II, Scene 1?  

Don Pedro:

In faith, lady, you have a merry heart.


Yea, my lord, I thank it, poor fool, it keeps on the windy
side of care.

That’s me.  I try to keep on the windy side of care…gusts and all.  It doesn’t always work.  I spend a great deal of time pausing to listen to the sounds that emanate from J’s bedroom.  I read into the coos and giggles, into the shuffling of his feet and into the silence.  That instinct that I developed when the children were newly born and I had to wake up to feed them or in response to every whimper from their room is intact.  

With Spring Break starting tomorrow at 3 PM when J steps off the bus, I’m feeling a little stressed out.  I will have to entertain J, phase out the hats, and keep my sanity…if the weather holds up this will all be easier.  Pray for the weather to hold up.

All in all, the hats are no longer an imperative issue.  I can now move my hand to the left of my chin and J automatically knows what I mean.  I can now forget briefly that it is our habit to take off the hats as soon as we get home and J reminds me.  Like the creatures of habit that we are, removing the hats is becoming one more habit in our repertoire.  Like brushing our teeth, making our bed, doing our laundry…taking off the hats is part of our schedule and, hopefully, in short order will become second nature to all of us.

That’s where we’re at, friends.  Our hand gestures are pointing us towards hatlessness in increments of fifteen minutes…we can now go for over two hours a day here and there, and maybe by the time Easter rolls around we’ll be able to go four hours.  I will flap my hands and then put them together in a pleading gesture to achieve this.  Heck, I will stand on my head if need be…that’s how much I miss the sight of my son’s constantly bare head.

Tomorrow is another day…I feel more progress lurking there.  On the windy side of care, with all this hand-flapping I might just take off, don’t you think?

A Paean to Pandemonium…

There are moments when the machinery that runs our daily routine clicks along quite beautifully.  We can hear the gears neatly falling into place, and the rhythm is flawless, seamless, steady.  Everyone seems to be following the same choreography; we lean and step and turn and twirl to the same exact song, all of us having determined that this dance is one we know well and performing it to perfection.

Then there are the OTHER moments…

To see us getting ready for the day’s events this morning you would think we are a well-oiled machine.  J had his breakfast, his med, and scooted upstairs in the most cooperative of moods.  His clothes were readied, his ablutions were completed and, miraculously enough, the same rhythm of readiness was taking place in the room where my husband was preparing for work.  We managed to get lunches and snacks prepared, everyone had what they needed without having to scurry back and forth searching for it.  Even the dishwasher was emptied and the dishes and flatware sorted before the garage door closed as I waved goodbye with a benevolent look on my face.

Rewind, please, to two nights ago at around 10:20 P.M.  The kitchen is still looking like something exploded in the middle of it even though we had dinner at seven.  J is crankily going up and down the stairs still gathering boxing gloves, searching for his green cargo pants (they’ve been sitting in a laundry basket waiting to be sorted and hung,) TGG is frantically searching for the keys he always swears were “RIGHT HERE!” and not finding them, my husband is retreating towards the hallway closet to find a jacket and asking if he left his wallet on the counter or the bedside table, and I am standing in the kitchen wondering how things got so…normal.

I could tell you that my efforts at organizing and keeping things moving at a healthy clip result in some sort of cohesion, but they don’t.  I feel fortunate, nay, BLESSED when not one curse word is muttered as people set out to greet their daily occupations.  In fact, I feel blessed when one of those people who don’t mutter is ME.

I go about my work at home with Wagner’s Ride of the Valkyries playing in my head.  The desired effect at the end of the day would be closer to the First Movement of Beethoven’s Symphony No. 6 (Pastorale.)  What I usually end up with is Tom and Jerry’s The Cat Concerto with Liszt’s Hungarian Rhapsody No. 2OK, I’ll admit that there are days -and these are, thankfully, tremendously infrequent- when it’s more like The Ramones’ I Wanna Be Sedated.

I try to be organized.  (“Try” being the operative word there.) For the most part, I succeed.  I have allotted a space for everything in this house, and it works beautifully…but the human factor, of course, interferes every time.  I am not complaining.  I am stating facts.  I would like to lead a more organized existence, but we are people and people are (even at their most organized) inclined to messiness.  J is punctilious about certain things, but he can also be rather scattered (hence the search for the green cargo pants.)

We are that family that prides itself in having taken J’s need for order and attention to detail and applied to the way we handle our household.  There hasn’t been a toilet paper shortage in a while; we always have extra toothpaste, shampoo, soap, and other toiletries people tend to take for granted.  We have a spot by the door where keys are hung (mostly MY keys, of course) and places designated for shoes that only find their way there during my Wagnerian moments.

We have weekly menus posted in the kitchen, and the grocery list is constructed based on these.  We have the freezer divided in areas for poultry, beef, pork and fish…and things still get interspersed and mislaid and misplaced.  We have cooked pork because we thought it was boneless, skinless chicken and vice versa.  We have put salt in the coffee because J poured salt in the sugar bowl.  We have an abundance of toilet paper, that doesn’t mean we don’t get the occasional “CAN YOU BRING ME A ROLL OF PAPER?????  I DIDN’T REALIZE THERE WASN’T ANY!!!!!”  The bills get tacked on a bulletin board, but I have to constantly weed out the things that the children (or not…my husband does it, too) tack on top of those.

That is why the lovely Boccherini’s Minuetto mornings are so special to me.  I compare them to those mornings when, before the construction workers arrive with their noise and their machinery, all sorts of birds skip and hop along the lawn as I drink that most necessary second-cup of coffee.  I stand wrapped in a shawl, cup and saucer in hand, and I watch the Sun slowly crawl up the sky, the leaves appearing timidly at first and then more boldly on the previously naked branches of trees far and near, and I smile.  The coffee is perfect.  The shawl is cozy enough.  The birds are happy; the lawn and the trees are getting greener with each passing day…


Reality scurries in and wraps itself around my feet.  Until that moment the kitchen seemed clean, the house smelled fresh, the phone hadn’t rung…and my family had faded into the background for a moment.  I wasn’t thinking of bills to pay, pants to mend, socks to throw out because the whole foot goes through the sole.  No one has athlete’s foot, pending dental appointments, acne, broken nails, the wrong kind of meat for tonight’s meal.  No one can’t find their keys, has lost a piece of paper they really needed, forgot to make an important call or refuses to wear a pair of pants because it isn‘t a pair of green cargo pants.  Everything was perfect and lovely and organized.

Nah…I’d rather have it messy…bring on The Ramones, please.

We could get used to this…

Do any of you remember Abdul the Bulbul-Ameer?  I don’t just mean the poem which is, in fact, Abdul Abulbul Amir and was written in 1877 by Percy French; I mean the Fred Quimby cartoon from 1941 which is based on the poem.  If you google the name of the cartoon you will see a picture of good ol’ Abdul…and that’s what we used to think we saw across the table while J was having dinner.  Not so much the size because J is taller, but definitely the bulk of the headwear…sans feather, of course.  (Thank goodness he never wanted a feather…can you imagine scrum cap, Rasta hat AND feather???)

J now removes his hat for meals.  J also removes his hat for periods of up to 35 minutes at a time.  J also gets ready for school in the morning while bareheaded.  This is a development we could definitely get used to, and we wholeheartedly plan to get used to it, indeed.  That J now laughs and coos and babbles happily while hatless is just icing on the cake.  That all I have to do is point to his chin and he removes the hats without so much as a hint of hesitation is a lovely cup of coffee with the slice of cake that has icing on it…

Leafing through photo albums and looking in the computer files, we have very few pictures of J without his hats on; there’s Christmas 2010…hats.  There’s Spring 2011!  Hats.  Oh, look at this one from Summer 2010, and that one from Halloween 2011, and the road trip to move out here last summer and our trips to the pumpkin patch.  Hats.  Hats.  Hats.  Hats.  J sitting by the Xmas tree.  Hats.  J showing off his new bedroom.  Hats.  J riding in the car or sitting on the swings or watering the plants or playing with his Legos.  Hats.  Hats.  Hats.  J sitting on the couch for a family picture.  Hats.  J going off to the first day of school.  Hats.  Sixteenth birthday.  Seventeenth birthday.  Hats.  In fact, many of those pictures are populated with hats, boxing gloves and Slinky (in all the generations we’ve seen rise and fall.)  And, I must amend, in the early stages of the Hat Phase, we had the boxing helmet on rather than the lower-profile scrum cap…

We’ve come a long way, baby!

I often wonder about how to explain to people what we do every day.  I mentioned yesterday we are “real people” and our lives are just not that outwardly exciting to those who observe us.  It takes some “knowing” or “walking in the same shoes” to fully comprehend how thrilled we are about slowly phasing out the hats that J’s been wearing.  I’ve met people who have said, point blank, “I’d just take the hats away and that’s that.”  These are the people for whom our explanations are worthless; these are the people who not only have “normal” children, but who wouldn’t have their children any other way, as if a developmental disability was a choice one makes.  These are the people we refrain from telling how we’re in the midst of removing J’s hats…what’s the point???

Remember the visit to the psychiatrist last week?  On that day we were told that J was tipping the scales at 262 pounds.  I called bull on it when we got home.  Unless the young man has a rather heavy tumor somewhere, gaining ten pounds while eating less and moving more is pretty far-fetched.  His pants, if anything, are looser…he’s actually wearing shorts that should, by all accounts, be one size too small…and they fit comfortably.  So at home he weighs exactly what he’s weighed whenever we’ve taken him for his checkup every three months.  The next time we go in, not only will his weight be better assessed (since he will be wearing lighter clothing associated with warmer weather,) but he will also (and this I vow at this moment) sit at the doctor’s office for his session without his hat.  The gauntlet is thrown…and stomped on…yes…

You may ask how I intend to achieve this and all I can say is patience and an egg timer, and boundless determination.  I’m sure J will cooperate because he is now more willing to accept that we keep our part of whatever bargain we’ve struck.  I think a level of trust has been established that wasn’t there before…we like to refer to it as “yes, you’re getting your hat back” trust.  We don’t move the hat from where it’s taken off, and we don’t try to persuade J to leave it down a little longer once the timer has rung and he asks for the hat back.  I don’t know if this was in Kissinger’s playbook, but it’s working for us.

The truth is we haven’t had to negotiate with things that are beyond the scope of what is acceptable, and we’ve somehow managed to strike a happy medium with J.  Snacks now stay in the box, unconsumed, overnight.  He can go a whole day without drinking his 8 oz. soda, as if he has completely forgotten that he’s allowed that.  He now shops without the urge to buy, buy, buy.  He now spontaneously reminds me of things that I have mentioned as we walk home from the bus…I no longer have to say “what do you have to take to school tomorrow?  Do you remember where you’re going on Wednesday?”  Yesterday I read on his book that they are going on a field trip tomorrow and he needs five dollars for his lunch.  When we got home, I took out the money and left it on the dining table; while J was putting away the dishes and cutlery we’d just extracted from the dishwasher, he motioned towards the five dollars.  I thought he meant something else, of course, because I am always underestimating the kid who will happily walk around without his hats on.  MONEY, he said, and he pointed at the quarters and bills.  I asked (like a dummy) “money?” And I got a roll of the eyes and MONEY!!!!!

“OK, ok, ok…I said.  I’ll put the money in your room.”  And up the stairs I went.

Below me, the sound of flatware being sorted into neat little piles was laced with a mumbled and mocking OK, ok, ok…meee mee mee…

And all the while, as he mocked his poor old mother, J wasn’t wearing his hats…

THAT is progress.

Real people…

Channel-surfing for half an hour on a Sunday evening has led us to the realization that we are not interesting enough for reality TV.  Wait.  Let me amend that statement to we are not OUTRAGEOUS enough for reality TV.  Better?

We switched channels repeatedly for half an hour because on Sundays the pickings are slim.  Since we are not avid TV viewers, we seldom find something we truly want to watch while we flip channels.  What we do see is a wide variety of TV commercials that leave us scratching our heads: bright white teeth, scent sprays that will mask ANY odor regardless how heinous (HA!,) and remedies that sound like the side-effects are far worse than the ailment they’re trying to cure or alleviate.  And then, of course, there are reality shows…flip through any channel in your TV listing and you will find some life being chronicled in minutest detail for no particular reason other than people feel like they need to share their travails, tribulations, foibles and completely orchestrated reactions to completely orchestrated events.

How would our family life play in such a medium?  Not as interesting as it really is, that’s for sure.

From a distance we attract attention: a tall, burly boy with whiskers, a scrum cap, a Rasta hat, four boxing gloves and Slinky is enough to make people stop and stare.  Add to this a tall man who looks somewhat Middle Eastern, a tattooed and pierced young man with a goatee and a surly expression on his face, and a woman whose hair has been shorn to an inch in length.  From a distance, indeed, we offer a great deal of potential for interesting developments.  Up close, we are as dull as dirt.

Our behavior has a clear explanation, and that’s not something that people want…people want the outlandish behavior of people whose lives are not interesting enough, but who are willing to over-emote for the sake of celebrity.  That’s what it is, really, over-emoting over very little.

What is it that makes people want to do this?  I have trouble understanding this because we get stared at all the time, and it’s actually not a particularly comfortable feeling.  Would the feeling be milder if we were getting paid for our trouble?  I don’t think it would.  The thing is attention is something others seek and we are stuck with…we didn’t ask for J to be so noticeable, but there is very little we can do about his special circumstances.  We grin and bear it, even when we’re not feeling or looking our best.

We could, of course, argue that we have something to teach people through our experiences, but there is only so much people can do within the parameters of ordinary, everyday life that will keep being interesting to the frequent observer.  A reality show involving our family would be force to edit out hours of NOODLES/NO, SODA/NO, CRACKERS/NO and be left with CHEESE/NO, PIZZA/NO, COOKIES/NO.  How interesting can a negotiation of half an hour of hatlessness be?  Such things as a fabricated cliffhanger would be necessary for a situation that can only (realistically speaking) result in a YES or NO answer…

Reality TV has very little to do with real people such as ourselves.  It seems like the issues surrounding a group of women who really don’t like each other much and end up being forced to interact socially out of boredom, commonality of social and financial circumstances or the fact that they are neighbors are, in the great scheme of things, less pressing than the ones we face.  The difference, I believe, is that we handle them with a shred of dignity, a chunk of humor and a great deal of humanity.  What would we do if we had to be followed around by cameras? Would we bring the needed attention to the issues that confront families with Autism in the mix of their everyday existence?  Ultimately, the answer to that question is no; people don’t want to know what is real about those on whom they spy…they want the gossip, the lurid aspects of private lives that, when open to display, one wishes had stayed private.

We are real people and this means, mercifully, that we are dull when subjected to the keen observation of others.  Our eccentricities can be explained quite simply, and any further questions would be easily answered but people stop cold at the word Autism.  Ah, they think…another one of THOSE families.  People don’t want to watch real people because there is nothing they can consistently harp on; when a situation is clear and complex at the same time, people are turned off by the factual aspects of it.

Our show would open with J waking up in the morning, shooing the cameraperson away, the grownups shuffling out of the room towards the kitchen, people groaning and mumbling until caffeine kicks in, J dancing down the stairs to ask for breakfast, J leaving for school, mom staying behind to clean and do the ordinary things that she does on a daily basis, dad going to work, TGG dragging his fanny home to crawl into bed after a long night of work…and who wants to watch “normalcy?”  Who wants to witness the little struggles that come with phasing out a Rasta hat and a scrum cap?  Who wants to watch us crush Risperdal into a spoonful of Pixy Stix twice a day and argue with J about a pair of green cargo pants?  Even to us it seems tremendously banal, but we know it isn’t…

Is that the difference?  Real people KNOW there is apparent banality in their lives that covers the very legitimate struggles of day to day; reality TV people don’t recognize that their constant banality is not as interesting as they hope to be.  They fill the airwaves (or whatever they broadcast things on now…I’m so out of touch, am I not?) with their pettiness and we flip through channels wondering why they garner so much attention.  Between the toddlers whose mothers are raising little beauty queens, the dancers, the so-called housewives who never clean a toilet and always look ready to attend a cocktail party, the fortune-tellers, the teenage mothers, the drunk twentysomethings…we make them celebrities, we fill their heads with notions of grandeur…

Nah, I’d rather keep it on the down low.  I’d rather fly under the radar and fight and hug and scream and laugh and argue and complain and actually achieve something even if the world only notices the outward weirdness…

Real people rock…

The Great Negotiator…

It has been a weekend when our negotiating skills have taken center stage.  We’ve been (to paraphrase the old song) winning a little, losing a little…but, all in all, we can’t complain.  We have seen the top of J’s head more often over the past three days than we had in the past two years, and at no time has he been hatless merely for the purpose of a bath.  No, ladies and gentlemen, J has voluntarily removed his hat and patiently waited until the timer has made the low rattle that suddenly turns into a rather loud (and annoying) brrrrrrrriiiiiiiiiingggggg!

In the process of acclimating him to this new status quo, we’ve had to accept that J -who is a teenager through and through- will want something in return.  Because he knows that my patience and willingness to give in can only be pushed so far, he has calmly and politely requested things.  Furthermore, J has actually requested things that he really, really, really wants…so there hasn’t been random requesting of things just for the sake of getting his way.  We are not, thank goodness and all the powers of the Universe for this, being held hostage by hatlessness…

I would pinch myself, but I’m not going to; I’ve learned that this is neither dream nor dream-about-to-turn-into-nightmare…this is the new order of things, and the sooner I start accepting it with matter-of-factness, the sooner J will realize that negotiation is unnecessary.  While at first we reacted with some degree of obvious surprise at the sight of J walking around with the strap of his scrum cap undone, we now just smile at him and don’t make a fuss…the smile is encouraging, the fuss would be a reminder that there’s an emotional opening for finagling something or that he can tighten the strap just to make us squirm.

Meals are being consumed with J’s luscious head of hair visible from every angle.  Laundry is being folded, chores are being done…all with hair fully exposed.  If I could get him to go for a walk without his hats I’d be so close to “winning the lottery” again that I’d probably faint from the excitement.  I am sure I will be able to persuade him to meet the great outdoors without his head covered, but I will have to gingerly proceed towards this goal: dogs, you see, would cause anxiety and the hat would serve the purpose of making J feel like all is well.

I pick my battles, as you can clearly see…

Of course, the downside of the weekend has been that, after all our gardening exertions, we now have a freeze watch in place for tomorrow night.   The change in the weather pattern is not surprising; J has been avidly listening to Christmas music, a sure sign that things are not quite as spring-like as we’ve thought so far.  I have told J that tomorrow when he gets home from school we will bring the plant containers and, with his placid smile and a slight arch of his brow, he said OK.  In hindsight, this freeze watch should have been obvious to me as we put away blankets and jackets on Friday; J thought our whole push to get things done was pretty funny, and he giggled and laughed to his heart’s content.  Foolish mother, I didn’t notice that there was a streak of all-knowing J in his mirthfulness.

The weekend has been successful.  A lot of PLEASE, THANK YOU, I WANT.  Also a lot of time without the hats.  In fact, we got so many things done without the hats that I encouraged J to put Slinky down more frequently than usual and that was something that worked, too.  As I told TGG this morning: we are working towards weaning J of the emotional crutches that he’s been relying on, and it seems to be working.  The boxing gloves, bless that boy, were put in a basket under his bedside table; the humidifier has gone into storage; the green cargo pants (for which I’ve yet to find a replacement) have been completely set aside for the sake of plaid shorts.  This is what progress feels like…

Without trepidation I now say we are moving forward.  We can take the kid to the mall without incident; he will calmly sit with Dada while TGG and I float from store to store looking for clothes that TGG wants.  We can stop at the drive-in burger joint and calmly order food and eat it there (except when the carhop happens to be a burly guy and TGG is deflated because the cute girl who carhopped for us the last time isn’t there.)  We are now saying NO more often, and the repetitive request is not demanding or annoying, just…well…repetitive.

Tomorrow is another day.  Let’s see what this last week before Spring Break brings.  I am hoping, by the time the bus rolls down the road and comes to a complete stop in front of our driveway next Friday afternoon, J will be more open to the idea of baring his head for me for periods that add up to three hours a day…  I know…three hours isn’t much, but when you haven’t seen your kid’s head for that long in two years, you get excited about the prospect of even one hour.  Three hours seems like half a day…

We’re working up to that…