The next time I say there’s nothing going on, please, feel free to smack me…

Woody Allen might have said that if you want to make God laugh you should tell Him your plans; it is attributed to him, anyway, but I’m sure many more people have thought or said something similar over the course of history.  Why no one said it to ME is beyond me.  It wasn’t so much my “plans” as my statement that nothing much was happening around here…someone should have reminded me of the immense luck attached to such a lack of upheaval…

This week…oh, this week…

Between relatives in the hospital and an impromptu visit we had to make (for what was vertigo and a headache and turned out to require an emergency MRI,) I just feel like going back to the day when I said all was quiet, right before I said all was quiet and then kick myself just as I’m about to write “all is quiet” in order to make the statement a falsehood.

Dada scared the crap out of me.  Why men don’t complain with as much gusto as they should when it is warranted is beyond me.  Let them have a garden-variety common cold and they act like Wile E. Coyote when the Acme safe is dropped on him, but if they are REALLY sick they drag their feet and act like it’s a minor complaint.

This is the horrible part of isolation.  TGG was manning the fort at home, just in case the school needed us.  Dada was in the MRI machine.  I was in the waiting room and I felt like I was alone in the middle of the Gobi Desert.  The thing is that when things go wrong, there’s usually two of us to back each other up…this time, by necessity, it was just Dada in the MRI machine, and just me in the waiting room.  When I went for my mammogram and was the only person there without a “second,” I didn’t feel anywhere near as lonely as I felt today.  I cannot even begin to imagine how Dada was feeling inside that tube…

Well…he later admitted he almost fell asleep.  I can’t blame him.  He looked tired and worried.  I was tired, worried, and had my blasted overactive imagination going full throttle.

I sketched so many scenarios this morning.  Dada could tell I was thinking about difficult possibilities and he said “why are you worrying?”  If what the test says is less than I am imagining, I will have already win the jackpot, Husband.  He said that’s what I always do, and I have to agree…if I let my mind travel down the roads I am most afraid of, anything else will seem like a piece of cake.

We waited together.  We talked about how, in our nearly thirteen years of marriage, we’ve only been to the ER twice with him as the patient.  Those two instances are almost thirteen years to the day apart from each other.  We saw younger couples, worried and still texting, drinking sodas and eating potato chips.  We saw older couples walking together with the aid of a nurse, a walker, a cane.  We saw the older couple who sat with us in the Results Pending Room and reminded us of ourselves, but older.  “They didn’t take any blood,” he said.  “Yes, they did,” replied his wife in a patient tone.  “Look, they tried here (pointed to his arm) and couldn’t.”  “They took it from the wrist!,” she said loudly.  “Huh?,” he replied.  “The wrist!  She got it from the wrist!”  “They didn’t take any blood!  And I think I hurt my wrist!,” he replied.

By the time the lovely young doctor came in and told us that Dada is fine, but is working too much, stressing too much, not complaining enough, we were emotionally drained.  I cannot put into words the relief, and I couldn’t physically express it in a way that would tell the world I was really, really glad that my beloved husband is not in any danger, mortal or trivial.  The doctor sat on the arm of the chair and said “the only thing in the MRI was a lesion that we don’t see often.  It’s called a hemangioma.  It’s on the skull.  The radiologist isn’t concerned, but we’ll follow up with your Primary Care Physician.”

Dada and I looked at each other and smiled.  We nodded, thanked the lovely young doctor (oh, so young!) and got released and walked out to get our car.  Once inside the safety of the vehicle, we looked at each other and smiled.  I was born with a hemangioma on my right temple; it is a honking red spot that announces my moods and my blood pressure to everyone who cares to pay attention to the signs.  It has been the bane of my existence since the day I was born, and here is my husband, with the same darned thing on the surface of his skull…

“We are cosmically connected, woman,” my handsome husband said.  This is something we have discussed at length many times before.  This is something we are convinced of through and through.  I agreed, nodding and sighing with relief.  “Did you bury me?,” he asked.  “No, I cremated you.  But not before we moved to a much smaller place and I took care of you through your illness.  Oh, you hung in there for a long time.  J was crushed that you weren’t around.  It was quite depressing.”  He smiled.  “And I’m fine,” he said.  J, who knew nothing about our trip to the hospital, was curiously in tune with something not quite being as it usually is…he was anxious until I let him come into our room to see that Dada was there, and resting…

Nope…not complaining about things being quiet.  In fact, I’m going to make sure I slam a pot or pan against the floor from time to time to shake myself out of that way of thinking.  Chaos is good…in small amounts.

Today, well, I’m just glad that the man I love is healthy…and an admitted workaholic…and alive…and annoying…and here.

All quiet…

When I was about six years old, I got shot off a teeter totter by another girl in a park in Madrid.  I remember this distinctly.  I was nicely dressed (in what can only be described as a Partridge Family red jumper with a ruffled blouse, white tights and white patent-leather Mary Janes) and had just finished having my picture taken for my grandmother’s Christmas card.  Because I’d been so “good” about the whole thing (i.e., I hadn’t complained nearly as much about posing after my grandmother had pinched my thigh and glared at me,) I was allowed to play with the other kids while still dressed in these nice duds.

And then I flew.

My experience of a seesaw or teeter totter was, up until that day, very gentle…because I was so slight (and considered to be a fragile and sickly child, something I never quite understood,) the person on the other side would be very cautious about their movements, always making sure there was no propelling involved.  So my flight, my being shot off from the teeter totter was at once scary and exciting.  I hit my head, got a nice bump, was coddled to an intolerable extreme, but wanted to go back and play with the same girl…

I was not allowed to…in fact, the next time I went to that park, I was closely watched by every relative who traveled with me.

Did they not know about the Tarzan games?  Did they not know about sliding down the banister after applying lard to it?  Did they not realize that, in spite of their opinion, I was pretty sturdy and willing to be shaken, rattled, rolled and scared???  I would say apparently not, but I know that at least one of my aunts did, and hence the monologues I’d overhear in the kitchen…about how there will be plenty of time to be jolted by life and how I’d learn to enjoy not being jolted.

The year of our Lord 2010 jolted me (us) quite badly, and now I’m nicely settled.  We are not quite in the doldrums, but there is little to report by way of chaos.  Mostly, and perhaps because I seem to crave jolting, it is self-inflicted chaos.  J is settling nicely into not being in a state of constant crisis, and he is slowly letting go of the emotional crutches that impeded his progress while latching on more tightly to others.

I figured I’d tell you that.  Life is interesting, but not necessarily interesting enough for the rest of the world.  And, oddly enough, it’s not even like we’re stalled or anything…

For example:

1)  We are now working on teaching J to write his name in smaller spaces because he will soon (when he’s 18) need a checking account into which his disability checks will go.  He will need to pay for things and save receipts for the annual review.

2)  J seems to be leading a hum-along of The Conga on the bus in the mornings.  I have visions of Jack Lemmon and Tony Curtis in Some Like It Hot, but I don’t quite know why.

3)  J now offers food from his tray to anyone sitting at his table, and he’s eating less.  It’s not that he doesn’t have an appetite because he goes at his meals with gusto, but he seems to be more inclined to be “nice” and “share” than he used to be.

4)  Raggedy Ann is left on his bed every morning with an honor guard of boxing gloves.  Even the plastic tub where the gloves used to sit at the foot of the stairs has been removed.

See?  Nothing major going on…just life in general…a steady stream…

Maybe it will rain profusely soon and we’ll get hit with a sudden rush of water, but for now…no…not at all…

A well-timed, heartfelt, deserving encomium to himself…

J’s teacher writes to let me know that she doesn’t know what was going through his mind today, but he suddenly stood up, put his arms in the air and struck a pose that was interpreted by all who witnessed it as “I am the champion!”  I’ve seen this pose…sometimes it comes in the heels of finishing his run with the Wii; other times it’s attached to music…  Because she didn’t give too much detail, I can’t figure out where it came from this time, but I do know that it’s not random or lacking in significance.

For a person whose ability to communicate and empathize is impaired, J finds music a very effective way to tell us how he’s feeling, to inform his moods with music.  After reading the teacher’s note, I sat on the steps that lead to the basement and listened to what he was doing.  Call it spying if you will, but I think it’s all in the spirit of trying to figure out how he’s feeling.

The choices these past few days have been varied.  On Monday, after his outburst of Sunday evening, J was listening to Debussy’s Clair de Lune repeatedly; there was no sadness involved, but it did seem to relax him.  Yesterday he was happily listening to one particular spot in a DVD…one with boings and sproings that made him laugh, and he came to bed with a spring in his step.

I don’t know what it means, but this afternoon he was listening to Jim Croce’s I Got a Name, a song that basically speaks of self-respect and full understanding of who you are and your purpose in life, even if it’s not clear to others.  Does it have anything to do with a moment, perhaps of illumination, that he experienced today at school?

Reading too much into things is something that one does when the details are scant and the possibility of being enlightened is nil.  There are days when we feel as if we have to unravel a mystery when we observe J.  Because we cannot ask him and get a straightforward answer, we often seem to be adding one detail to another, and trying to figure out what they all mean.  We could spend hours talking about J, referring back to previous incidents, composing potential scenarios…if we added some drinking to the mix, we could be holding a symposium in the Ancient Greek fashion.  I think, personally, that Socrates would have been totally into discussing J, and J would have taken rather well to the Socratic Method.  That’s just me, though…

The thing that struck me today was that sentence: “I don’t know what was going through J’s mind, but…”  I read it aloud and he looked at me, his face completely non-committal.  A run-of-the-mill teenager would have shrugged, given a roll of the eyes and said “I don’t know what she’s talking about,” or they would have walked out and said “whatever!”  J looked at me as if I had read this sentence and it referred to someone else.  Then I peered at him through my sawdust-covered glasses (long story…not germane to the situation except to explain the extra effort) and he smiled.  CLOTHES?  Yeah, I said, go change your clothes…

An hour later Dada came home with TGG in tow, and I read the note out loud again.  This time, J rolled his eyes and walked out of the room after instructing everyone to change their work clothes into at-home clothes.  Jim Croce started singing once more.

I can’t help wondering if it’s a newfound sense of achievement.  I wonder if J is just aware that he is in control of things that he was afraid he wouldn’t be in control of…like his dependence on his gloves.  I wonder if he stood up and said to himself “It’s been a week and I don’t need the friggin’ gloves!!!”  Since he knows he can’t stand on furniture and since he probably assumes it would look goofy, he stood up and raised his arms in the air.  The closest thing would have been playing the Theme from Rocky or reciting Walt Whitman’s Song of Myself:

I CELEBRATE myself, and sing myself,
And what I assume you shall assume,
For every atom belonging to me as good belongs to you. 

We celebrate J’s achievements whether they are big or small.  We make sure we let him know that he is admired and respected, and we encourage him to try new things.  The gloves, however, were his own decision.  OK, we PRAYED vigorously, but God helps those who help themselves and, in this particular case, it was J’s doing…all of it.  We didn’t cajole, persuade, suggest, hint, force, indicate, steer, push…

Perhaps today, in one of those a-ha moments we all have from time to time, J realized that he has gone almost a whole week without his gloves and that he can function and that, while everyone is proud of him, he has to give himself a pat in the back.  Eureka! would have worked (it did for Archimedes,) so would have Nike! (which Pheidippides used to announce the result of the Battle of Marathon.)  But J simply got up, put his arms in the air and gave his class a moment to relish.

“We must remember this moment,” the teacher’s note continued.  Indeed, we must.  The rich layers of guitars in Croce’s song, the “and I’m gonna go there free, like the fool I am and I’ll always be…”  Yeah, that’s J all over…his dreams are constructed slightly different from ours, but there’s a definite sense of self, of achievement, of celebration in the way he speaks to himself and to us about them.  Sproing or boing; Debussy; Paul Simon’s The Obvious Child (with the drums of Olodum making J skip and bounce in a dance of joy,) the plaintive longing in Big Star’s Thirteen…it’s not PECS or ASL, but J’s talking…

And don’t you forget it.

 

A tempest in a teacup…

The weekend went along nicely.  J got to go down to the river for his walk on the dock (a form of entertainment that he seems to enjoy quite a bit, especially at this time of year,) and we also got to the bakery before they ran out of his favorite treat.  There was not much he could complain about until last night when he decided, rather abruptly, that enough was too much and he had a tantrum.

The cause for this remains a mystery.  We are completely clueless about it, but we know that it was rather animated, definitely emotional and came and went with the same suddenness of a microburst.  Mother -who had finally started feeling a little more human and a little less overwhelmed by the demands of summer- ended up curled up in the fetal position and you may now call her (well, ME!) a coward.  I am, I admit it…

I wish I could say I confronted the situation with great dignity, but the truth is that I pouted and whined like a middle-aged child.  I’m not proud of myself, but that’s the way it went.

When J finally calmed down (the whole thing lasted ten minutes,) we were all exhausted and, of course, trying to analyze what might have triggered it.  Let’s start with it was Sunday night and, since he is starting his job in the Orthopedics department bright and early tomorrow morning, TGG had not worked since early Friday morning.  This, it seems, might have contributed to J’s confusion.

The next thing we could think of was that, in their preparations for this morning, Dada and TGG had moved the cars, opening the garage door to do so.  J sleeps right above the garage, and one cannot open or close the door without him leaping to open his window and act like a sentinel.  That the cars merely switched places and nothing else happened, in spite of it being after 8 P.M., must’ve added to his confusion.

Mere moments before the tantrum, Dada had gone in to see if J needed anything.  What he found when he opened the door reminded us all of a scene from The Goodbye Girl.  In said scene, Paula McFadden (Marsha Mason) knocks on Elliott Garfield’s (Richard Dreyfuss) door because it is the middle of the night and he is playing guitar.  Paula asks “are you decent?,” to which he answers yes.  When she opens the door, he is naked, covered only by the guitar.  She is appalled and says “I thought you said you were decent!!!”  to which Elliott replies “I am decent.  I also happen to be naked.”  Well, figure the same thing met Dada (who knocked, by the way, before entering,) but replace the guitar with boxing gloves.

As I said, by all accounts we should have been smooth sailing last night.  Instead, we had a tantrum…and it crushed me.  Don’t ask me why, but it did.  I slept fitfully and I guess I worried all night that we would be back to carrying the boxing gloves to school this morning.

That J bounced down the stairs as happy as could be while I grunted like a cave-dweller over my cup of coffee is not something that I like to admit.  Whatever was bothering him was fleeting, and I was the one who allowed it to become bigger and more ominous than it should have been.

I lost my cool.  I felt as if all our efforts this summer had amounted to very little and had imploded in short order…and I was wrong.  The kid was pissed off about something, and I am simply slowly working my way out of the mental and emotional exhaustion of being en garde from the end of May to the middle of August.

I spent the morning lazing about.  I spent the morning thinking of how I can not be so tense about the absence of the gloves, the sudden burst of temper, the change in routine…and I couldn’t think of one single thing that I can impart as wisdom.  The only thing I kept thinking is that the tantrum wasn’t a big deal until it bothered me, and that I (like Prospero) made a tempest where there was none.

J had a good day at school.  He came home feeling happy and looking relaxed.  And he came home as loquacious as a person who seldom speaks spontaneously and is categorized as having difficulties in speaking can possibly be.

Be patient with me…after the summer efforts I am feeling a little high-strung still, but I’ll get better.  And J’s cool.  He’s just like you and I…he has his good days and he has his bad days, and I tend to hyperbolize…

Fine-tuning the give-and-take…

The School Day Without Gloves was a success…to an extent.  It was obvious to me that, regardless of the huge step forward that this represents for J, there would be something along the line that would require a great deal of patience.  And there was…

I spent the whole day jumping when the phone rang.  It was never the school.  It didn’t even ring that often, but it rang nonetheless.  I don’t know you, but I operate under the notion that the ring tone of the phone can reveal whether I’m getting a “good” or “bad” phone call.

Oh, who am I kidding?  I tend to assume it’s not good.  I usually can tell if my husband has something unpleasant to tell me by the tone in which he says “hello.”  He claims I’m imagining things, yet I’ve never been wrong about the “he-lloooh” as opposed to the “he-LLO.”  (OK, you have to be there to know the difference, but -trust me on this one- there IS a difference.)

The bus driver and aide informed me that J was a pleasure to have as a passenger.  Apparently he sang and giggled almost incessantly.  The note in the comm book said that he had a hard time adjusting to the cafeteria.  This, of course, elicited a call from me and I was informed by his teacher (who is, in my book, a prime candidate for the Teacher Rock and Roll Hall of Fame!) that she had never, in the year she’s known J, heard him scream in the way he did yesterday.

The scene unfolded as follows:

The first day of school, anywhere in the world and even under optimal attention paid to organization, is chaotic.  There are three lunches at school, and J’s class is supposed to go to what is called “A” lunch, or the first turn.  As the morning progressed and things were falling into place, J ended up in the cafeteria with (and I’m quoting here) two-hundred and sixty -something seniors who had to talk to the nurse about their immunization records.

(This tells me that the other morning at the doctors’ office, J was probably among the few from his grade in his school who were there.)

J, gloveless and overwhelmed, decided to act autistic AND adolescent all-in-one.  He made his displeasure evident in a rather loud and stubborn way.

This is one of those moments when I am glad that I’ve been candid and forthright with his teachers because this amazing woman knew EXACTLY what to do.  Basically, she told him -as she would tell her children- “that is NOT going to fly and you’re going to have to wait until I say you can have your lunch.  And you are lucky your mom can’t see you right now because she would be pretty pissed off about this display!!!”  End of story.

Twenty minutes later, and accommodating J’s need for a quieter space, he sat down to lunch in a separate area.  When I had this conversation with him yesterday, I reminded him of how fortunate he had been because I would have made him wait an hour before I even considered feeding him.  J’s teacher told me if it had been her kid she’d have made him wait longer, too.

J had been coming up and down the stairs to listen in on my conversation with his teacher.  I had her on speakerphone and J could hear us both when he peeked into the kitchen area.  He recognized “the mommy look” and he scurried downstairs to the family room, only to come back up and witness the “hand on hip and foot tapping stance.”  He scurried a little faster after that.

Once he realized I was done on the phone, he nonchalantly moseyed into the kitchen area and gave me the “hey, what’s up, mamma!” look.  I simply pointed at his bench and he sat, mouth agape, eyes round, Slinky silent.  The “talk” was brief, but to the point: rudeness and screaming are absolutely NOT acceptable and will not be tolerated, and his teacher has my blessing and permission to not take him to lunch at all if he behaves in such a fashion.  Let’s face it, I told him, you’re far from starving and you cannot be allowed to manipulate people.  I asked him, looking him directly in the eye, if he understood what I was saying…

He shook my hand vigorously and waited to be dismissed.

I know J understood because the hand-shaking is his conciliatory move.  The worst thing -to his mind- is that his teacher and I work together, and there’s no escaping our collaboration.  The way she and I see it, teaching J to behave properly and act responsibly is a sign of respect from us to him, and it inspires reciprocity from him.

We factored in the glovelessness, mind you.  We were aware that this would weigh on the way that J handled stressful situations at school yesterday.  This wasn’t a random intervention to nip in the bud a simple tantrum.  J made a decision to not carry the gloves yesterday and, yes, he might have felt insecure and a little unmoored without them, but it was his decision and he has to learn that decisions always carry with them a certain degree of commitment to expanding their scope.  “I’m not carrying my gloves to school” shouldn’t give him license to bite people’s heads off…if anything, it has added the responsibility of learning to handle difficulties knowing that he doesn’t have that back-up.

Dada and I were perfectly aware that, because of the difficulties faced yesterday in the cafeteria, J might take his boxing gloves to school today.  Considering that it was J’s decision to not take them yesterday, taking the gloves today would not have been a step backwards.  If anything, it would have been a logical conclusion to an attempt that, in J’s mind, had failed to render the results he’d hoped for, and we were perfectly fine with whatever choice he made…

J, we believe, has developed greater confidence in himself and will continue to do so if we all support him in a consistent and respectful manner.  J also seems convinced of this…

He didn’t take his gloves today either.

 

Cue a musical number, please, but don’t expect me to dance…yet!

Unless you’ve been living under a rock, you know today is J’s first day of school.  (Can you hear the Handel’s Hallelujah chorus mashed up with Dusty Springfield’s I Just Don’t Know What to Do With Myself?)

The last few days have been pleasant enough.  J, I think, was playing them like “well, it’s almost over, isn’t it?  I could squash your self-esteem like a bug, but I’ll play nice!”  I was playing them like “well, it’s almost over, isn’t it?  I could complain but in truth it’s been pretty entertaining and not that much work at all.”  It was work…a lot of work.  I feel like I just participated in every single event at the Summer Olympics…I would dance with joy, but I’m just too tired.

However, things are not as bad as all that, and I would be less than honest if I had the nerve to complain and whine about them.  I’m just going to tell the truth: I think we worked our fannies off this summer; I think we made progress, and I’m glad someone else gets to spend the bulk of the day with J; I gave all I had on a consistent basis, and I feel I deserve a break.  Christmas break, after all, is a mere 18 weeks away.  In the context of having an autistic individual in your household, that’s not as long as one would like to think it is…that barely gives me time to get ready for those two weeks of J indoors and getting bored if the weather is not conducive to doing anything outdoors-related.

So here I am this morning.  We’ve been up since 5 and J was up and getting ready for school shortly after.  By 6:30 the bus arrived and off he went.

I don’t want to get too excited about this particular development because it might fall within the unwritten stanzas of Jim Croce’s You Don’t Mess Around With Jim.  I’ll refresh your memory: you don’t tug on Superman’s cape; you don’t spit into the wind; you don’t pull the mask off that old Lone Ranger…  I think it remains unsung that you don’t boast about things until you’re sure they’re going to stick, but…

J didn’t take his boxing gloves to school today.  And it was not forgetfulness on his part…he actually REALLY left them behind.  After a long last look, granted, but he left the house un-gloved and happy…ish…

I guess last night, when I walked into his room and found him curled up in bed and hugging his boxing gloves tightly, he was having a “moment.”  He wasn’t crying, mind you.  J was calm, but pensive.  I am assuming that he was taking the time to let his gloves know that he was going to school without them.  He was letting them go gently, giving them time to adjust to this change.  In fact, J was giving himself the courage to adjust and accept a change that has been long overdue, but a change that only he could make.

The road with the boxing gloves has been long.  They presented an alternative to J beaning himself with his beefy hands, but they soon became the emotional crutch to end all emotional crutches.  We wouldn’t go anywhere without them.  We wouldn’t sleep without them (we still don’t,) and we would scream if they were taken away.  Not two gloves, but FOUR.  So, as you can imagine, the slow, at-times painful process of phasing out the gloves has been one we’ve encouraged but not been pushy about.

It hasn’t been easy watching J (tall, strong, imposing J) walking around with two hats, four boxing gloves and a Slinky for “protection.”  We have always (at times bracing ourselves for the worst) encouraged our kids to express themselves, to be who they are.  We’ve run the gamut from dressing like Ash Ketchum from Pokémon to walking like a T Rex on the prowl to…well…there were the years TGG would only dress in black from head to toe and then the years when he was dressing like George Harrison sometime in the late Sixties…  The boxing gloves, hats and Slinky combined with J’s autism and the quirks that come naturally were not easy to digest.  Mean people have existed since people have been around, and they seem to get meaner with each passing generation, so sending a Special Ed student to high school with all these accoutrements in place…not easy!

I don’t know what we did, if anything at all, to help J feel that it is OK to be without his boxing gloves.  It started little by little, as he would leave them behind when going to the store, going to the movies, going to town.  Religiously, though, he would make sure he had them for school.  His classmates even decorated a box for him to place the gloves in once he got there.  Throughout the summer program, every morning, we would walk down to wait for the bus carrying the gloves.  Not once did he choose to leave them behind; J didn’t even look like he might consider it.

So…what has changed?  Why today of all days?

I don’t have an answer, but I’m hoping that -somehow- he feels more secure in what he can do, in how well he can cope, and that’s why he chose to not carry them with him.  I hope that, for a good reason, he has felt empowered to walk out of this house and into the complex society that is high school without the gloves.  I hope that he knows that he’s cool in his own way, and that he doesn’t have to cling to the gloves for moral support because he is well-liked and people have faith in him.

Or maybe the gloves just became an encumbrance to him in much the same way one realizes that a blankie will get tangled in things, or a stuffed toy will prevent us from catching the ball or throwing the ball with much skill.  Or maybe the gloves are now the equivalent of being tongue-tied because he can’t sign as freely with them.

Or maybe he’s just growing up…

 

When it’s time for summer vacation to be over…

Anyone worried about the zombie invasion can rest assured that the masses of women walking around in a daze are not part of it.  I know this because I am one of them.  And the dazedness is not being caused by any movie star either.  We’ve just spent a whole summer wrangling, entertaining, being entertained and driven up walls by our children.  This is happening to the female population blessed with offspring of school-age and you can factor in some exponent for mothers of developmentally disabled adolescents.  I knoweth what I speaketh of…

On Friday evening -an evening like any other, mind you- I caught myself having an argument, spoken and augmented with sign language, while in the laundry room’s pantry area.  I was looking for some necessary ingredients and I found myself accosted by a complaining creature who seemed unsatisfied with the food available for dinner.  I, in high dudgeon, announced that enough complaining had been done, and that was that…off I went, carrying my basket of supplies and stomping up the stairs.

I was halfway to the kitchen when I stopped on my tracks and sat down.  Ten minutes later, Dada found me holding my head in my hands and laughing hysterically.  “What is up with you????”  I explained, amid peals of laughter, that I had just had an argument, using spoken words and sign language, with Miss Pipa, the cat.  I then informed him that Thursday the sixteenth might prove to be the day when I slowly start inching back closer to sanity, and then it was Dada’s turn to laugh…loudly!

From what I’ve been told, my level of tolerance for summer has been waning consistently.  The effects of all-J, all-day have made themselves vividly noticeable for the past week or so.  At the grocery store I performed a long monologue about whether I’d asked to be reminded of the need to buy tomato paste.  They call it a monologue because I kept going with it even though Dada, J and TGG had already moved on and were in the next aisle over.  Furthermore, I seem to have been insisting to J that I had asked him to remind me.  My family doesn’t think it’s early on-set Alzheimer’s…they just think it’s time for J to go back to school full-time so that mom can go back to doing something other than trying to save the world one autistic teenager at a time.

I know I’m not the only one thus afflicted.  I have seen the other moms, and we exchange looks of empathy when we meet at the store, the doctors’ office (where a whole waiting room seemed poised to get shots today,) or the pool.  We all look at each other and wonder “can she possibly think that those three kids are more work than J?,” and “she can’t possibly imagine that the kid with the hats is more work than Huey, Louie and Dewey here…”  They’re not crosses to bear, of course, but they -like fish and house guests- start to smell funny after a while…you love them, but you want them gone for a whole day.  OK…five days a week from 7:20 to 2:30…that’s enough…

I confess (with some shame clouding my heart) that I would love to sit on the couch and flip through the whole array of worthless TV channels we pay for…  I also would like to sit down on the floor and not get up with any remnants of laminating material stuck to my pants or feet.  I won’t deny that, come Thursday morning, I will be filling the tub and taking a bath…while reading…and I might go so far as to give myself what passes for a pedicure around these parts.  I am strangely (and guiltily) excited about the prospect of eating a bagel and having some coffee without having to worry that there are sixty things on my to-do list, and 55 of them will take a longer time than necessary because the purpose is to teach J something.

I am a bad mother.  I know.  I should be ashamed of myself.  I am.  I also am happy that J will no longer roll his eyes when he sees me because I can tell he’s thinking “again?  You?  Don’t we have someone else?   This is a lot of YOU for one summer, isn’t it?”  On Thursday we will revert to the “oh, Mrs. So-and-so, J starts smiling so broadly as soon as we crest that hill!!!  He knows you’re waiting for him!!!  Look how happy he is to be home with his momma!!!”  I, by virtue of my absence, regain my popularity…and that’s what I need right now…to regain my popularity!

Seriously, though…I am excited about J returning to school because I KNOW how much he has learned and how much he will enjoy seeing his friends after a whole summer without them.  He can go back and announce proudly that TODAY IS THURSDAY AND MY NAME IS SO-AND-SO AND GOOD NORMING (ok…he still doesn’t say MORNING, but NORMING is cute.)  Anyone who whips out a book of animals will be dazzled by his ability to name them and repeat the noise they make.  Yesterday at Barnes and Noble he didn’t name more animals because I couldn’t find more to point out to him.  So, yeah, he will go and conquer this school year…

And I will sit at home and find ten thousand more things that I want to teach him and wonder “when’s he coming home??????”

But there’s that hill and we both get happy when we realize the school day is over and it’s home-time.

I really need to get out more, huh?

Anticipation may make problems appear larger than they are…

We went to the Department of Motor Vehicles this morning.  We had a considerable wait.  We survived.  In fact, J did beautifully, worrying only when he thought TGG had left to leave rather than to park in an actual parking spot (instead of by the rail guard as he’d had to when we arrived.)  Once that obstacle was removed, J was cool…calm…collected.

I had been explaining to him -as the week progressed- that we would be going to the DMV to show some papers and have his picture taken.  We then made a point of showing him all our ID cards, and he said PICTURE for each of them.  This morning, with very little hesitation, he got dressed, brushed his teeth and set forth to valiantly face the crowds.  The line was rather long when we got there, and our ticket said the expected wait-time was 20 minutes.  We were there for a little over an hour, but our trip was successful and we will not quibble over this detail.  By the time they handed J his paper card (the plastic one will be delivered by mail in about a week or so,) he was so happy that he smiled broadly and then fished out his wallet to put it there.  That he signed his name at the bottom and it was clearly legible was the cherry on top of his sundae.

The degree of relief that I felt upon completing this transaction was enormous.   I hadn’t even realized how tightly clenched my stomach was…it was, in fact, as if someone was holding it tightly in their grip.  By the time we pulled out of the parking lot, I was ready to roll down the window and yell VINI, VIDI…but then I stopped myself…J was the one who did all that.

We had some shopping to do, and we did it.  J’s treat was the burger that TGG got him for lunch.  Of course, as we were leaving the last store we shopped at, TGG asked “J, do you want a BURGER?”  I knew what was going to happen next, but I wanted TGG to have the experience first-hand.  J, you see, has taken to repeating things twenty times…so if I say “let’s get the key to check the mail,” J will say MAIL or KEY 20 times.  Not nineteen.  Not twenty-one.  Exactly twenty.  By the time we were turning at the stoplight to the street where the burger place is located, J had said BURGER thirteen times and, had TGG not been the cautious driver that he is, he’d have laughed more heartily than his training from Dada taught him is prudent.

J was obviously feeling mischievous and jolly; as soon as we turned into the parking lot where the burger place is, J started giggling so contagiously that we couldn’t stop ourselves from joining.  The lady at the drive-thru window must’ve thought we were teenagers on an outing without mom and dad…  TGG asked “how come he says things 20 times?,” and I said “that’s as high as he can count.  Hence why I haven’t really put much focus on teaching him to count to thirty, let alone 100.”

The kid who doesn’t really like dogs bought a copy of Old Yeller today.  TGG was worried that, seeing as Old Yeller meets his maker on account of a nasty bout with rabies, this would work against J seeing dogs in a friendly light.  “When was the last time you saw J watch a movie all the way through?,” I asked.  TGG thought for a moment and shrugged…”exactly,’ I replied, ‘by the time Old Yeller bites the big one, J won’t even be in the room…”  TGG nodded as if I’d just said the wisest thing in the world.

Will J watch all of Old Yeller?  Probably not.  Will J grasp the implications of that shotgun and the rabies?  Not likely.  Will this movie make him like dogs any better than he does now?  No.  Dogs are an entirely different thing on TV or the silver screen.  They bark, jump, run, growl, wag their tails and it has no direct effect on J.  He knows he can turn them off.  He knows he’s in control.

I fretted a lot in anticipation of this errand.  I am, I admit, a fretter when it comes to these things.  It is, I think, the PTSD we all -as a family- suffer since The Great Crisis of 2010.  We are afraid that, in spite of all the progress made in the past two years, J will slip back into Godzilla-tearing-through-Tokyo mode, and that he will do it in public, scaring innocent by-standers and making us look like the worst parents ever.  I would strike that last part because it makes me sound selfish and self-centered, but I don’t want to lie to you.  I do worry about what people would think if J -who is no longer an adorable child whose tantrums can be chalked up as cute or even remotely tolerable- has a meltdown in public.  If at the age of fifteen, being shorter and not as imposing physically as he is now, people thought he could crush them if he was so inclined, what would they think now???

We got looks at the DMV.  I asked TGG to ignore them for J’s sake because the focus was J’s calm and cooperative mood, not other people’s inability to act with any manners whatsoever.  There were a lot of kids J’s age there; some were even younger.  They were there to either take their written learner’s test or to take the practical test.  I wanted to turn around and say (to those giving us surreptitious looks) “yes!  He TOO will be unleashed on our town’s roads!!!  Beware!!!  Beeeee-waaaaaaaaaa-re!!!!” and then let out a good ol’ Vincent Price bloodcurling cackle…

Rather than succumb to my nature, I shrugged it off.  I celebrated J’s cooperation and his success at completing the task at hand as if he’d just earned his wings…

So…

A pretty successful Thursday.  And…less than a week ’til the first day of school….

The latest developments in semaphore…

J’s ASL vocabulary is increasing quite nicely.  That doesn’t, mind you, mean that I can always get my point across as easily as I’d like to…it’s a work in progress.  It is not unusual for me to use PECS, verbal prompts, ASL and a sudden burst of dancing to explain myself to J.  I don’t know for certain that all this is necessary to make myself understood, but I do know that he finds it vastly entertaining.

We are a week and two days away from the official start of the school year.  On Thursday morning I will be attempting the impossible (something along the lines of jumping through the chasm that is The Grand Canyon,) and going with J to the Motor Vehicle Department (or Department of Motor Vehicles…because some states call it one thing and others call it another…thank you for the confusion) and getting him his state-issued ID.  This might sound like a simple task, but it isn’t; for one, I don’t know what wait times are like where YOU live, but there are people who have aged quite a bit waiting in MVD lines (I am one of them) in some places.  Second: J…hats…camera…posing for a sudden flash and AAAARGH!!!  (I can see the headlines…and I’m not exaggerating!)  So, yes, Thursday morning will require perfect timing, a good mood on the part of our subject and, please please please GOD!!!, no waiting of an excessive nature.  (I have considered camping out in front of the office the night before and claiming I’m waiting for Justin Bieber tickets to go on sale, but I have some dignity and I can’t stand Justin Bieber so I wouldn’t dream of even PRETENDING to be waiting for him in any fashion.)

I am trying, in my own special way (read: imitating Isadora Duncan) to convey to J what we are doing Thursday morning.  Like trying to explain other obscure concepts like “breathing,” this is taking a little more effort than I expected.  My explanation of “breathing” usually involves, well, BREATHING, but J thinks it’s just taking in air and then letting it out.  It IS that, yes, but when you’re taking him to the doctor and you want him to take a deep breath, you can just have the NOISE he makes to fake a deep breath, you need the lungs to fill…  Oh, never mind…I am not making any sense, am I?

I have gathered all the documents necessary for this particular errand, and I am hoping that it will go as I plan it and not as God’s sense of humor might make it.  I’ve shown him my card, Dada’s card, TGG’s card…his school ID card…and I’ve tried explaining that we go and ask the state to give us a new one.  And that he gets to stand there HATLESS and pose for a neat little photo.  (Memo to me: pack timer…will need it…)  Then we wait a few minutes and off we go…

I am sure this would be a lot easier if my life were a musical rather than a comedy of errors.  We could break into song, do a little dance, change the set a little while furniture and such roll away on casters and I’d make myself immediately understood.  If the music is catchy enough (like The Waiting For the Bus song,) I might be able to get away with it…if not, well, then J will give me the weird look I usually get when I do the “dry yourself after your bath” dance or the “this is how we get in and out of the car with something in our hands” demonstration.

Aside from the ID card, I’ve been working on other little things that come in the next few months.  I did exhaustive research regarding things like signing J up for Selective Service.  Yes, ladies and gentlemen, J must sign up for Selective Service and there is only a need to apply for a waiver if he ever gets called up to serve.  So…another thing on my list: get a letter stating J’s diagnosis so that we already have it handy (oh, we have like ten of those from over the years, but it’s best to have a recent one to prove not much has changed,) just in case…  Along with that comes the research that goes into J applying for his Supplemental Income from Social Security when he turns 18.  All the paperwork that goes with that and the time we need to earmark for that particular transaction at the Social Security office…well…better start planning ahead.

There is also the dreaded guardianship process.  I don’t even know where to start with that.  I have to make an appointment with an attorney, but I have to gather all the paperwork BEFORE meeting with him/her.  The choreography is intricate, and the timing has to be flawless…because J has to be present for all these things, and I have to prepare him for the upcoming waiting in line, sitting in the waiting room, just twiddling your thumbs waiting…  I don’t know how well I will be able to explain all these things with what I now have handy to make myself understood.

My explorations into the filing cabinets have led me to look at the immense pile of paperwork that we have accrued over the years where J is concerned.  Everything is documented: his birth, the sudden changes he went through, the concerns, the realities, the progress, the lack thereof, the scares, the hospitals, the disciplinary issues, the medication, the doctors’ observations of his behavior, the schools’ willingness or unwillingness to deal with him…it’s all there.  J’s life is more War and Peace than The Adventures of Captain Underpants; it’s not easy to flip through the pages without thinking “geez!  That’s a lot of words!!!! and very few pictures!!!!”  With J one doesn’t take a stroll down memory lane; with J one climbs up and down, wades through bogs and rivers, almost gets stuck in swamps…all for a person that many don’t really SEE.

And all this I have to try to explain to him, the interested party, the subject of the briefly intense attention, the star of the movie…

I’m taking out the flags and getting ready to do a lot of flag-flapping…

On why I have no patience for people wallowing in self-pity…

A perfectly able and intelligent human being, old enough to know better, has said to me this morning “I’m just there…”

If this person had been standing in the room with me, as opposed to thousands of miles away, I would have smacked them…hard.  So…since I cannot let it rip with this person, I’m going to say what I think here, and I hope you will be patient with me and understand that this anger is not directed at you, but rather at the portion of the planet’s population that wants others to boost their ego.

Ahem…

F*ck you and your self-pity.  You want me to cheer you up so that you can feel special and loved?  Screw you!

For all intents and purposes, you self-centered dweeb, J’s “just there.”  Not much is expected of him.  People seldom give him a second glance because of anything other than curiosity, and yet…every single, friggin’ fraggin’ day he gets up and goes on…SMILING!

In this house, we could have given up and decided to “just be there” a long time ago, but there’s no time for wallowing.  Life, my dear delusional friend, is not about that…life is about grabbing the bull by either horns or balls and moving along.

You have settled  yourself (by choice, mind you, you person with -at a minimum- average intelligence and ample charm) in a bean bag chair stuffed with depression and under-estimation.  You can get off your fanny right now and use the intelligent brain you’re equipped with to do something worthwhile and, instead, you’re expecting me -whose neurons have pretty much fizzled out by the end of the day- to waste precious time telling you you’re wonderful and don’t lose hope.

I KNOW life can suck.  Trust me, “life can suck” is acquired by the bucketful in this life, but then it’s tossed out (virtually unused) and replaced with “life can kiss it” and we move on.  If I woke up every morning thinking “oh, lord, please, what is going to go wrong now” and didn’t immediately readjust to “well, whatever it is, that’s what I’m here for,” I’d be in a shit bucket of trouble.

Don’t talk to me about being “just there.”  And then, when I call you out on it, don’t tell me I’m laying a guilt trip on you.  No.  That’s not good enough.  That doesn’t work.  I don’t have time to pat your head and go “there, there, darling.”  If I don’t do it for the child that resided in my womb for 38 weeks, I’m certainly not going to do it for a person who graduated cum laude with a Bachelor in Sciences and who has earned a living since the early 80s.  You are an adult, and your problems are not so immense that you cannot handle them.  As far as I’m concerned, if you have time to have your hair and nails done, to get a tattoo and to spend the bulk of your time befriending people on Facebook, you’re totally capable of not being “just there.”

So..in a nutshell, screw you…

Now, I’m going to shake you off and then I’m going to work with J on some new signs so that when we go to his doctor’s appointment next week we can communicate a little better.  And then we’re going to work on some useful arts and crafts projects, and then we’re going to make bread for tonight’s dinner.  And then we’re going to work in the garden, do laundry and such…

See…nothing in the calendar for self-pity.  No just being there.  We will be there, here, over farther, closer by, under and over…but never just JUST.

Argh!!!!!!!!!!!!!!!

IT’S HAKA TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!