Much to my chagrin…

We had a bad Saturday.

No… I had a bad Saturday.  All the upheaval and stress were entirely my fault.  J was just being…autistic.  Insistent.  Monomaniacal.  Hyper-focused.  Obsessive.

I simply had a major deficit in tolerance.  Major.

It boils down to ill-timing and the word COFFEE.  J decided, because for some reason it soothes him when he knows that I’m going to sit down and have a cup of coffee, that he had to insist on me making coffee even though it was way past breakfast and I didn’t want any.

I started saying “No, J, I don’t want coffee.  Thank you.”  Quite calmly.  Of course, because he didn’t even stop for breath over the course of ten minutes while repeatedly saying COFFEE and gesturing towards the sideboard where we keep the coffee supplies, I -who should know better because I’ve rationalized all the symptoms of menopause and am constantly reminding myself that this, too, shall pass- had a meltdown.  Literally.

I pulled a “J at his worst,” if you will.  I didn’t hit myself.  I didn’t stomp on the floor.  I had a meltdown.

If I could have walked around wearing a paper bag over my head for the rest of the weekend (so embarrassed and mortified was I,) I would have.  Dada and TGG came home from their errand to find me crying like an idiot on the stairs leading up to the third floor.  J was in the living room, calmly watching Sleeping Beauty and waiting -obviously- for his mother to start acting any age other than the one she was acting minutes before.

I confess that I feel stupid about this whole incident.  I felt stupid when I was done with my tantrum (I think that is a good name for my overt emotional display,) and I’m even more mortified now.

My reasons, surprise surprise, are completely absurd.  Do you want to know them???  I’m sure you don’t, but they might entertain you so here goes:

I am the youngest of my parents’ children.  The difference in ages is enough to make “them” share an experience of life growing up and me to have an entirely different one.  We are a dysfunctional family.  We are dysfunctional to the point where not relating to each other is the best course of action.  Because I am the youngest, even at this age, I am thought of -far and wide- as the bratty, mercurial child who gets whatever she wants.  On top of that, my dear friends and strangers, I am considered unfeeling and heartless because, well, I have enough drama at home and I purposely shun any drama outside these walls.

Yet…I get dragged into things…

On Friday night I got an e-mail from a sibling (with whom I had an argument somewhat related to J and our isolation as a family) that -point blank- started with the subject line I know you hate me.  If you’d like to know what the argument that I’m referring to, please go back to February 4th and read my post about living in The Bubble (and, with that, here comes all the SPAM about the housing bubble…)

Look: I haven’t watched soap operas since I was maybe nineteen years old.  If I want to witness excesses of emotion, I can quite obviously create them myself (when I reach a certain point,) or wait for J to go into one of his mood swings.  As hard as we try, we still have (and always WILL have) a considerable amount of egg shells on the floor that we have to step on…stress is our bread and butter.  Of course, it would be a better source of bread and butter if we were helping other people get through their stress FOR PROFIT, but we accept it as part of our everyday life.  I can’t clearly convey this to anyone who doesn’t live with a similar situation at home…and I certainly haven’t been able to make my siblings understand.

There’s a reason why Tolstoy’s most impacting quote is “all happy families resemble one another, each unhappy family is unhappy in its own way.”  We are not unhappy, but we certainly experience our share of strife and upheaval on a regular basis.  Our strife and upheaval are recognizable and relatable only to those who experience a similar set of circumstances.  You can argue that, yes, all families have their own brand of stress, and that ours is not at all exclusive.  I don’t think our stress is exclusive, but it is inscrutable when the premise one departs from is that “well, how bad can it be?”

I am not depressed.  Please, don’t think that’s the issue.  I do get sad from time to time, and I get overwhelmed.  Who doesn’t?  I don’t take the view that everything is going to be bleak and hopeless down the road.  I take the view that, with a little elbow grease, even the worst moment can be worked through with some semblance of cheerfulness (or, at least, without more woe than is absolutely necessary.)  I don’t understand why anyone would want to, just to get attention (because that’s the only explanation I can come up with for the I know you hate me subject line followed by the urgent I need dad from a person about whom I worry, but who is utterly and completely in a world of their own creation and who don’t make any forays into mine.

This is how isolated we are: my children have not seen any of their uncles or aunts in years.  Six or seven years being the most recent encounter; one uncle has never met J, and hasn’t seen TGG since he was a toddler.  My argument against US traveling is…well…could we put J in a flight to somewhere and be absolutely certain that it will be without incident?  This doesn’t seem like a valid excuse for anyone.  We don’t even take vacations because we can only go as far as we can drive, so we can’t really hop on a plane to go to Disney World (plus we don’t know how J would react to a HUGE Mickey Mouse.)

What makes it worse is that, after all the melodrama of I know you hate me and I need dad, Dad never got a call, and this person’s life seems to have continued unaffected and unimpaired.  The melodrama seems to have been concocted purely and exclusively for me, so that I would have a worm in my ear (digging a tunnel all the way into my brain and my emotions) all weekend…

And J, sadly, was the recipient of my anger, my frustration, my ridiculously emotional and totally uncalled-for tantrum.  J doesn’t deserve that, and I wish I could take Saturday back, and make him understand that my heartfelt apology (which I issued quite sincerely and quite abjectly) didn’t even begin to scratch the surface of how sorry I am that I blew up at him…

So…there you have it…I totally and completely suck…

There’s yardage between us…

One of my goals for J has been helping him develop more independence walking from the bus to me…and I’ve managed to put about 20 yards between his drop-off point and my waiting-spot.  The ultimate goal by the end of summer is to have J walk from the bus to the management office, a distance of about 50 yards.  By the end of NEXT summer, I’m hoping to have the ability to wait 200 yards away.  That’s approximately 182 meters.  I’m not holding my breath waiting for this to happen, but…I’m hopeful.

The walk is up a gentle slope, and there is traffic going both ways.  J is dropped off on one side of the street and, without crossing into traffic (which is, by the way, virtually non-existent at that time of day) he can make it to where I wait in a matter of seconds.  The main issues are that I have to make it obvious that I’m standing there so that he will see me with little nudging or reminding from the bus aide, and that -should there be any cars on the road- they will hopefully be patient with the big kid sauntering over to where his mom is standing with her fingers (and toes) crossed while praying to any and all powers in the Universe that this works out.  One honk out of a single car and things would get too interesting for my taste.

You’d think that, yes, people would KNOW that a burly individual who requires his mom to wait for him isn’t quite up to par with the other kids, but…  I am tempted to design a t-shirt that reads “don’t honk at my kid.  He’s still learning.”  I don’t think that would help, though, people tend to get distracted by the reading and don’t pay attention to the fact of what is going on around them.

So…

Back to the plan: we will be moving to the new townhouse in late August.  This will be around the same time that J starts school for the fall semester.  The distance between that townhouse and the bus drop-off is a little longer than the distance between our current townhouse and the corner.  The advantage is that we will no longer have to navigate any slope other than the one in the neighborhood’s driveway.  The rest of the way is a straight shot from the office to home.  As of today, I am waiting for J at the top of the driveway’s slope.  By the end of July, I hope to add another thirty yards, but I have to do it ever so gently…the spot where I hope to complete this part of the goal will be a blind spot for J.  That is: he will have to act on faith that I wait for him day-in, day-out without fail.  Once I get him to do this, I will work -over the course of a year- on making the distance greater until I am waiting at the entrance of our street (still close enough to RUN LIKE THE WIND!!!! if he needs me) and then walk home with him from there.  The cell phone, of course, will play an important role in all this: the aide can call me and let J hear that I am THERE and WAITING before he walks towards me.

It’s been a very long time since I realized that J and I have this relationship where, no matter how old he gets, I will have to wait for him when he gets home, just like he has to be walked to the corner to wait for the bus in the morning.  I’m perfectly fine with our routine and with the circumstances that bind me to this dependence of his.  I know that I will never see him open the front door with his own set of keys, drop his backpack in the middle of the foyer and yell MAAAAAAA, I’M HOME AND I’M HUUUUUNGRY!!!!!  The two-hundred yards, modest a goal though they may seem to the mother of a neurotypical child, seem like a rather long distance to me.  In fact, it’s almost like I’m sending the kid to do the Indy 500, and I am riddled with guilt, anxiety and anticipation all at the same time.

This has been a week of turmoil for me.  That sounds worse than intended.  I am not conflicted, depressed, sad…it’s just that, once in a while, the outside world sort of roils around the comfort of our adjusted view of the world.  On Monday I got two pre-recorded calls from J’s school reminding me that college admission tests would be on Tuesday.  Not one call, mind you, but TWO.  “Remember to get plenty of rest and bring two No. 2 pencils!!!”  On Wednesday I checked the mail to find a rather elaborate reminder of Career Day for J’s parents.  “Come talk to representatives from different universities…”  The National Guard wanted him last week…they offered him “alternatives to finance your college education.”  Tongue-in-cheek responses are readily available in this household, but it’s not always easy to chew on the tough gristle of “what could have been.”

As I stand there, visible from the corner but enough of a distance away to make it a challenge for J to reach me, I think of how this wouldn’t have been like this if …  And that’s when I say if WHAT?  I am suddenly reminded that I don’t have time to deal with the alternate life that we might have had; I don’t have time to ponder about how nice or bad or weird or complicated or easy or whatever it could have been.  I stand there, at the top of that slope in the driveway, and I am forty-eight years old, and my eighteen year-old is finally starting to walk towards me rather than with me.

When babies reach a certain point in their development, we encourage them to take their first steps.  We stand close enough that we can catch them, but to them it seems leagues away.  We put our arms out and wiggle our fingers, calling out in an encouraging and affectionate way.  TGG did it.  I remember  (forty-seven years ago though it may have been) doing it.  J did it…a little later than expected, but he learned to walk.  And now…

He emerges from the bus.  He is finally dressing in his shorts (new ones…plaid…quite a handsome pair) and sandals and he’s not wearing his hat…and he walks briskly towards me, a big smile on his face.  He swings his backpack over his shoulder like any other kid would, and there’s cheering from the bus because the aide and the driver love him and want to see this happen, and I’m reacting like he just won the Olympic Decathlon.  I notice he only looks over his shoulder when I ask him to walk a distance AWAY from me…

I’m cool with that…I can work on that, too.  Eventually…

If you want to call walking upright and making sense “composure,” go right ahead!

We made it through yesterday.  I was the worse for wear by the time everyone got home from work, but I got from morning to bedtime in a somewhat functional state.  Perhaps the green beans were less al dente than I would have wanted, and the mushrooms turned out downright soggy, but it was dinner, and they ate it, and that was the end of that…  I actually went to the kitchen and put some effort into cooking a meal when all I wanted was to have something materialize out of the blue.  Carry-out and delivery were NOT an option…so I cooked…with one eye closed and the other blurry, but I cooked…

In spite of my tiredness, the hot flashes and J’s persistent efforts to confuse and confound me, I had a rather productive day.  Relatively speaking, of course.  I managed, for one, to not burn the house down.  I also managed to roll with the punches and not, regardless of how badly I wanted to three distinct times, raise my voice unnecessarily.  I also managed not to cry, and I REALLY wanted to after the fifteenth replay of the Easter Bonnet song that I wish had flown out the window on Easter…

We planted corn and Swiss chard.  We watered plants already planted.  We vacuumed the living and dining rooms, and we washed dishes.  We made grilled sandwiches for lunch.  We went to get the mail.

J’s new scrum cap arrived in yesterday’s mail (all the way from England!!!) and we were both happy about this.  The red one, sadly, was much the worse for wear and smelled like a wet sock with an incontinence problem.  As soon as I pulled the package out of our box and said “Oh, J!!!  It’s your NEW ha…” out of my hands it went and J held it aloft in much the same way Mufasa lifted Simba so the animals could see him from up on Pride Rock in The Lion King.  We were a few yards away from the mail room when J motioned for the package to be opened.  This took quite a bit of effort.

Is it me or are things packaged more…impossibly these days?  I mean as in “impossible to open,” “impossible to find the spot where you specifically have to cut or tear to get it open,” “impossible to open without losing a nail, sweating like a pig, using your teeth, requiring a hunting knife, utility shears…” you get the picture.  This package, I swear to you, was nothing more than a pouch, but it seems like someone in Wonderland designed it, and that someone was possibly the Mad Hatter.  The thing could be fitted over the arm like a bracelet, but was completely sealed and the compartments didn’t seem to connect but did.  We made it to the corner and J, old hats in hand and urging a little more expeditiousness with the other hand, tapped his foot impatiently as I tried to free his new hat from this…thing.  Either I am getting older or these things come equipped with a secret camera that records you desperately trying to get at the contents so that the employees at wherever it is you bought it can have a laugh at your expense.

Anyway, after five minutes of very vigorous exertion, I opened the package and J found yet another package inside, which he ripped open more easily and (with what I swear to you was a triumphant look that belongs on top of Mt. Everest) he got out his new scrum cap.  And a thing of beauty it is.  I told him so even though I was out of breath, sweating, and even more exhausted than we started out on our leisurely stroll to check the mailbox.  The package I’d managed to rip to shreds trying to open it was still in my hand and that’s when I noticed the “tear here” with easy to pull tabs that would have saved me the public display of herculean (and obviously unnecessary) effort I’d just expended.  Oh well…

Handing me the ratty, old red scrum cap (which will receive an all-honors burial later,) J firmly planted his new cap on his head.  It is very attractive and it fits quite well, but…

I ordered a X-Large cap and, clearly, it is because it fits J’s head quite nicely.  The strap, however, is too short.  J was not deterred by this, and he immediately strapped the hat on and developed three chins and a bluish tint to his face.  I stopped and looked at him.  “J-man, I think this will need some adjusting.  Apparently, X-Large doesn’t mean HERE what it means THERE…or you’ve surpassed X-Large.”  WAH-WAAAH!!!!  Clearly this was not going to work as seamlessly as I hoped.  I couldn’t very well return this particular cap when J was holding on to it with all his might.  Ok, I COULD return it, but was it WORTH it????  The hat had taken three weeks to get here…it would take three weeks to go back…is there such a thing as a XX-Large hat?  No, there isn’t.  A quick glance at all the websites I regularly visit for J’s head-to-toe apparel made this quite clear: the strap was too short and I’d have to deal with it…

J sat on the couch looking at me as if I had every intention of taking his new (and suddenly deeply beloved) scrum cap, stomping on it and then setting it on fire.  Have you ever had J pull the “don’t be evil, Mother.  I LOVE it!!!” puppy eyes on you?  No, you haven’t.  Believe me when I tell you they are the saddest, most piercingly accusatory eyes you would ever confront.  I sighed and mentally ran over the list of possibilities for fixing this hat.

Ten minutes later, courtesy of my beloved aunt’s insistence that one should a) never toss anything simply because it SEEMS useless, b) never pass up buying what people say you have too much of because there’s no such thing as too much of anything non-perishable, and c) never surrender when faced with a child’s (regardless of how overgrown he/she may be) desire keep a thing they love (regardless of how sudden this affection might seem)…I had a solution.  I removed the strap, put a two-inch long piece of black elastic in, reattached the strap to that and returned the hat to J.  He had been looking at the whole procedure as I’m sure Dr. Christian Barnard’s cohorts were observing the first heart transplant.

I’m sure the recipient of that heart was grateful.  I also am sure that when J hugged me (knocking the air out of me…I who had little steam left in me for the rest of the day,) he meant to say THANKYOUTHANKYOUTHANKYOUTHANKYOUYOU’RETHEBESTEST.  Ok, maybe all he meant was “that was cool,” but I was buoyed for the rest of the day (not enough to not overcook mushrooms and green beans,) and THAT is all that matters.  I may have been unable to take three steps without being winded, and I might have swayed as I did the dishes, but I fixed a hat…how’s THAT for composure???

 

The word “disaster” is hyperbolic, but I am in a hyperbolic mood…

I wish the school district calendar would synchronize its no-school days with my no-hot flash nights.  The way things stand at this particular moment, J and I are in for a rough Monday.  I hardly got any sleep last night.  I, obviously, arose from this fractured rest in a less-than-stellar frame of mind.  The usual reminder robo-call didn’t come last night, and Friday was so busy that the teacher didn’t have a chance to jot down a reminder in J’s book.  We were operating under the assumption that this was just any other Monday…

Sheldon Copper would say “oh, gravity.  Thou art a heartless bitch.”  The high of standing in the corner, hoping to send J off to his happy daily occupation (which, by the way, he was REALLY looking forward to) led to confusion, frantic text-messaging of teacher, double-checking of school district calendar and immediate restructuring of plan-for-the-day.  That is: Dada rushed back home to change into work clothes so he could rush J to school (he assumed they’d missed the bus,) and then -faced with the knowledge of our mistake- we had to deal with J’s dashed hopes and the fact that I would not be able to squeeze a quick recuperative nap this morning.  The woman who had solemnly declared “I do not want coffee” at 6:20 as J and Dada headed out the door, bolted out of bed screaming “WHERE’S MY COFFEE????” at 6:35 when they returned and it was determined no sleep would be available to me until, hopefully, tonight…

Since this morning and until tonight, the day is going as I expected: hectic, frantic and marked with bouts of irritability that I can almost predict.  I say “almost” because J’s playing his cards close to the vest.  I, on the other hand, am not playing with a full deck.  That I am at a clear and rather significant disadvantage should be clear by now.  If we were playing with dice, I would have lost those, too.  All my attempts at catching up with J’s mental acrobatics (all of them designed to confound me, of course) have failed miserably.  His machinations are Nadia Comaneci at the ’76 Summer Olympics…my brain is Wile E. Coyote at his lamest.  I wouldn’t be surprised if, by the end of the day, I am asleep on the couch and J’s happily running the household for me.

How do you figure they can still take TODAY off when there have been so many 2-hour delays and so many snow days this school year???  Just over the state line, a school district cancelled Spring Break to make time up so they wouldn’t go over an acceptable date to finish this semester.  I just don’t get it…  I remember reading a bumper sticker a few years ago: When God created Man SHE was only kidding.  In light of the fact that menopause symptoms are slapping me around and the school district calendar has done me wrong, I think we can safely assume that God is all male.  A female deity would be a little kinder to those of us who spent a whole night plagued with palpitations, hot flashes and night sweats.  Or, at least, I’d like to think that a female deity would take these things into consideration.

OK.  I wish I’d known.  I wish I’d remembered.  I’m sure I knew about today not being a school day somewhere back when the school year started.  How I skipped writing it on the calendar (the Master Calendar that contains every single shred of information regarding our comings, goings, stallings, etc.) is beyond me.  My much-celebrated meticulousness has bitten me…I will not say where.

There is nothing left to do but make the best of this situation.  We’ve done, in honor of Earth Day, a good bit of gardening; we’ve done laundry; we’ve put away the clean dishes; we have made beds.  J is as fresh as a daisy…I look like I just got run over by a stampede of very angry wildebeests.  And it’s barely noon…

Four hours until any form of “reinforcements” shows up…

Forgive me for being a whiner (which I’ve admitted I can be…to a glorious degree): AAAARGH!!!!!!!!!!!!!!!!!

 

Every crisis is a vocabulary-building exercise…

Last night, as we waited to be seen at the Urgent Care, I was thinking of how much of my sign language is the result of something going wrong.  When J started complaining sometime around 5 PM yesterday, we went through all the vocabulary we collectively know in order to diffuse the crisis.  Between the Proloquo, the sign language and talking and talking…we got nowhere.

Actually, no, we got somewhere….we got to TOOTH.  The LAST thing we would have wanted to hear was TOOTH, and that’s what we got.  I managed to convince J to open his mouth wide, and TGG and I proceeded to check J’s mouth and throat.  With a tongue depressor from the first aid kid (what?  Your first aid kit doesn’t have tongue depressors????,) we inspected J’s teeth and mouth, and then we looked at his throat…his red, swollen, angry-looking throat.

Ah!  Clarity (or swollen mass of tissue angrily staring back at us!)  I explained to J that we were going to the doctor.  DENTIST?  No, not this time…thank God!  We have to go to the doctor so they can look at your throat.  The perplexed look on J’s face was enough to tell me that, even though he’s been equipped with one that flares up from time to time, the concept of THROAT was foreign to him. While I tried to point to his throat and indicated with the tongue depressor that we were going farther back than his molars, TGG ran to look for the website I use for my ASL…  He returned with the sign for THROAT and, after a three-second tutorial, we all went around demonstrating that we too have throats, we signed the word for him, differentiating it from TOOTH, MOUTH and TONGUE, and then J -a bit concerned by the over-the-top emoting- got dressed and off to the Urgent Care we went.

We were there for approximately half an hour, and during that time J managed to make TGG the winner of the “how many times will J hide in the bathroom” pool.  I said 7; Dada (who was convinced his experience gave him an edge in predicting this) said 5, and TGG won with six.  The staff at the Urgent Care really has us pegged for a bunch of weirdos; we arrive in a herd, go in as a herd, and manage to laugh our way through the whole visit as if the possibility of strep throat was reason for hilarity.

While we waited, J used his Proloquo to inform us that he wanted to go to the store, and that he wanted to buy cheese, pizza, noodles, soda and cookies. Once they’d checked his blood pressure, his weight, temperature, etc., etc., he declared himself to be FINISHED with the whole thing, said THANK YOU to the ether and wanted to go.  His insistence, combined with a persistence we all know he is fully capable of, made for rapid-fire THANKYOUTHANKYOUTHANKYOUI’MFINISHEDGOODGOODEVENINGIWANTTOGOTOTHESTOREPLEASECHEESEPIZZASODACOOKIE.  Six or seven of these strings of stream of consciousness and we were laughing our heads off.  Dada made it worse by, after the fourth trip to the bathroom, asking what J would do if he ever found a toilet installed in an examination room.  For some reason, this made us all laugh even louder, and the nurse poked her head in to make sure we weren’t playing with any medical supplies.

J had a bit of a temperature, the NP said, but his quick-test had come back negative for strep.  They would, however, be sending the sample to the lab for a proper culture and they’d call us when they had results.  They recommended Tylenol for the pain, and just to bring him back if anything else developed.  Declaring ourselves satisfied with the situation, off to the store we went.  J, having received costly and dedicated attention from his entire family and from the staff at the Urgent Care, was happy and spent the rest of the evening comfortably waiting for us to cater to his every need.  We didn’t comply with this part of the equation, by the way; we reminded him that he simply had a sore throat and that he’d survive, so he had to wash dishes and help out as he normally would on a Friday night.

This morning, much to our surprise, he was up early, but he didn’t try to cajole us out of bed, force us to have coffee or demand anything other than that Zelda remove herself from his path as he returned from the bathroom to his bedroom.  He acted quite nicely when I went in to check him, asking me for medicine (which he got,) permission to go downstairs (which I reminded him he didn’t really need,) and license to get his snacks (which I extended while asking for prudence in his choices.)  When Dada and I went out to run errands, J stayed with TGG at home and they watched cartoons all morning until we came back.

Once all the groceries had been put away, a process that J oversaw with great care, we took the new patio umbrella out of the car.  If we had brought home treasure from a sunken ship, J wouldn’t have been happier…he supervised the placement of the umbrella on its stand, inspected the mechanism to open and close it, and skipped back into the living room to watch TV.  Once the temperature is back up (it has been cold and windy all day,) he will start sitting outside to listen to his music and -because he has WiFi on his iPad- to watch movies on Netflix.  Summer, we now see, is officially around the corner and J knows it…

THROAT.  I learned how to sign THROAT.  I didn’t know this one.  Why?  Heaven knows.  J’s had enough sore throats over time that I SHOULD know THROAT in sign, but I didn’t.  Just in case I also looked up TONSILLITIS.  Thank goodness we won’t need that one, but it’s there in the repertoire…unused and unneeded for now.

Just tell me what you want…

In spite of much progress made over time, J can be pretty inscrutable.  There are days when he wants us to know what he’s trying to say.  There are days when he seems to get some degree of satisfaction from watching us become more and more frustrated.

Some people collect stamps.  J seems to have made a hobby out of confounding us.  I don’t know if that counts as collecting anything, but it’s something he appears to do for pleasure.

Last night, oh…last night was one of those nights when I wanted a crystal ball, powers of ESP, and a window into J’s mind.  I get the feeling the ball and the window would have been clogged up with fog and the ESP would have failed miserably.  There was just no getting out of him what the heck he wanted…and Dada, I fear, was not particularly helpful.

The evening ended with physical and emotional exhaustion.  I felt compelled to unload the brick that seemed to have parked itself in my solar plexus.  I asked Dada to listen without interrupting, and to not -for the love of all that is good in this world- close off his mind due to defensiveness.  I took off my glasses just so I couldn’t SEE his facial expressions as they changed while I talked.  This, believe it or not, helped ME a great deal.

J, I told him, makes a titanic effort to make himself understood.  It might not seem like it most of the time, but there’s a great deal of effort in there.  Especially, I explained, if you consider that it’s not in his nature to make that effort to communicate.  He is extending us a courtesy, and the wise thing to do is extend it back.  When we get frustrated, which is perfectly normal and acceptable, but shouldn’t be made a habit, we are basically telling him that we’re closed off to his effort.

Of course, I said, J will get frustrated way too early in the game and he will melt down, but we are the grown-ups and the ones fully equipped to communicate so we have to put even more effort into redirecting him to productive communication.  When we don’t do this, when we immediately succumb to our frustration, when we tell ourselves “I don’t know what he’s saying” without offering alternatives to bridge that gap, we’re sending the message that we don’t care enough to go farther down the road with him.

I talked about my concern that, in spite of this myth having been debunked, I was going to somehow turn out to be the one woman who managed to prove that Refrigerator Mothers are real and to blame for Autism.  I explained that a lot of my frustration comes from the fact that everyone seems to trust me so much that they think I can handle this with one hand tied behind my back, my eyes closed and while juggling lit torches.  I’m not that capable, I explained.  I might be dedicated and ballsy, but I’m not “in control” of jackshit around here…

We fell asleep and woke up to calm morning.  J went to school and to a field trip without incident.  He came home and is happy.  He made an attempt at asserting his will in an unreasonable way, but I managed to stay cool throughout the moment it lasted.  We are now happily sitting in the basement, and he’s told me it’s GOOD and hugged me.

I don’t fault Dada.  He does have a lot on his plate with work and such.  I know that he loves J more than words could ever express, but I also know that he thinks me highly skilled and capable, and that can be a liability in these cases.  What if, I said, something happened to me?  What if I have appendicitis and need emergency surgery?  What if, heaven forbid, I’m incapacitated or die???  The idea of a mess in handling our household, especially where J is concerned, horrifies me.

I know what everyone in this household wants (more or less,) and I put a great deal of effort into helping them get what they want.  If I can’t help them get it, at least I can acknowledge their wants and needs and, when possible, I can offer encouragement or advice.  When what they want is impossible or impractical, I can offer wisdom or perspective.  It’s part of my job.  That with J this is more complex a process frustrates me, but it doesn’t dissuade me from trying…and, believe me, I do try.

I want to not be the only person who can pinpoint what J is trying to communicate, help him improve his ability and his resources to make himself understood…I want to not be the only one because it’s REALLY HARD to be ON all the time.  I know Dada tries, but sometimes he just has too much faith in my ability to handle things, my ability to BE HERE.

Does that make sense?

Beware the Ides of…April?

J and Miss Pipa are conspiring to get rid of Miss Zelda.  This is now being touted as fact in our household and, sadly, J is doing nothing to prove us wrong.  The other night, as I mentioned yesterday, J left poor Miss Zelda out on the balcony during a rainstorm that left her drenched and much reduced in size (mainly because her fur comprises 2/3 of the space she occupies.)  If she’d been on the third floor balcony, the opportunity to hide under fakedirondack chair was there, but on the kitchen balcony…nope…she was totally exposed to the rain.  The fact that she enjoyed it, thrived on it, and looks darned good since her “rinse” is entirely beside the point…

The way we figure it is that Miss Zelda is lovely, but she’s no Miss JuJu.  Last summer, when Miss JuJu “disappeared,” J and Miss Pipa were upset. They looked for her; they waited for her.  They both acted like they’d lost a best friend.  This was notable enough that we figured they needed a friend to bring a little company to their lives.

As we all know (if not, hark back to September of last year and get acquainted with the saga of The Kraken’s arrival,) this plan didn’t quite fly with the wings we’d hoped.  The only “wings” this situation had were similar to the wings on the Wicked Witch of the West’s flying monkeys.  Miss Zelda promptly made enemies; her level of energy was way too much for four year-old Miss Pipa (who suddenly realized she was “old” in comparison,) and excessive for poor J who was scared of her glossy, dark and abundant fur and her bright yellow eyes.  That’s when the whispering began…

Instead of bringing home a new friend, we brought home a new enemy…a common enemy that made J and Miss Pipa allies.  Before that moment they’d circled around each other with distrust.  Miss Pipa had once been the “new” and “young” cat, playing second (and discordant) fiddle to the more sedate Miss JuJu.  Four years later, Miss Pipa found herself in the dowager position, Miss JuJu having been abducted and eliminated by suspects unknown.  If this is starting to sound like a page taken out of Russian history (circa the 1800s) it’s no coincidence.  Miss JuJu, see, had become dowager when Miss Kona -our first ever cat- had moved on to greener pastures in that big playground in the sky.  Yes, my friends, since 2001 we’ve owned four cats…not counting the litter Miss Kona had after a couple of weeks of having “disappeared.”  The litter was so varied in furriness, coloring, sizes and features that we figured Miss Kona had found the only sailor-cat bar in all of the Southwest.  Let me put the chronology down for you…

Miss Kona Bean: 2001-2006

Miss JuJu Bee: 2004- 2012

Miss Pipa Pepita: 2008- Present

Miss Zelda “The Kraken” Fitzgerald: 2012-Present…remains to be seen.

Last night we figured this is no longer a cute coincidence to merely keep us busy.  Either J is conspiring with Miss Pipa to “off” Miss Zelda, or he’s trying to get rid of us…

Nine P.M.  J’s bath is done.  J’s in his room.  Dada and I are in bed.  Reading.  Battling in Verdun.  “Where’s Zelda?”  One person tells the other she was there a mere while ago.  Wasn’t she?  Yes, yes…she was trying to catch the “mouse” as you were using the laptop.  Miss Pipa, who sits at the foot of the bed in what seems like a totally calm and relaxed state suddenly stiffens up and turns her head slowly.  While Dada searched the house, I went into J’s room and asked -point blank- “where’s Zelda???”  BYE!!!  LIGHT!!!  BYE!!!  I gave him one of those looks that means I’ll be back and turned off the light.

Every room in the house was searched.  The cat was nowhere to be found.  I went back to J’s room and, using his whole legal name, informed him that we’d have a conversation as soon as I could locate the fur ball.  Mouth agape, J sat up in bed and bade me leave once more.

We reconstructed the events of the past three hours.  WHEN had we last interacted with Miss Zelda???  Well…we’d had dinner.   We’d checked the status of the flow of laundry.  We’d cleaned the kitchen.  We’d looked at the garden.  We’d transplanted some tomatoes in the front porch.  We’d transplanted some flowers in the balcony off our bedroom.  We’d washed our hands.  We’d discussed how quickly construction on the new townhouses is going.  We’d sat in bed and discussed how badly the Battle of Verdun and my book were going.  We’d played with Miss Zelda briefly.  She’d left the room.  J had walked in a few minutes later and asked for a snack, and we’d said yes, you can have whatever is left in the box and off he’d gone.  THAT was the last we’d seen of Miss Zelda…sometime around seven P.M.*

*Dinner was breakfast.  We ate early.  We were hungry.

I looked at the clock.  It was nearly 9:45 P.M. so Miss Zelda had been gone for nearly three hours.  Flashlights in hand, we set to the task of trying to locate and lure into the house the missing feline.  Miss Pipa, like a treacherous character from a bad B-grade film noir, started acting all concerned and upset about Miss Zelda’s absence.  We weren’t buying it…

At ten P.M., finally, Miss Zelda dashed in through the back sliding glass door.  She was dry, and covered with debris from under the many decks she must’ve visited.  I’m sure she became acquainted with all the night creatures that were strangers to her before last night.  If the rainstorm had seemed “fun,” this was an entirely different story.  She was spooked, and she wanted comforting.

We petted and comforted her, and then we marched up the stairs to J’s room.  The light clicked OFF as we approached, and the springs of his mattress squeaked loudly as he assumed the position of one long asleep.  We weren’t buying that either.  In we went, turning on the ceiling light.  HUH?  BIG YAWN.  Hello there, Mr. Man!  Zelda was in my arms and squirmed off to J’s bed.

The look on J’s face went from mock-sleepy to clearly FOILED!  Miss Pipa stood in the doorway, a fake look of relief on her gray and white face.  She and J exchanged looks.  J and I exchanged looks.  “No more setting Miss Zelda outside, ok?”  OK.  “You’re going to be nice, right?”  RIGHT.  “This is your cat too, you know.”  KNOW.  Dada crouched down and said the same thing to Miss Pipa, and got pretty much the same responses that J gave me.  J patted Miss Zelda’s head, and she purred in appreciation…

Another look was exchanged between J and Miss Pipa…a look I’m sure passed among the senators in front of the Senate right before they all descended upon Julius Caesar…

I’ll leave you now…I have to research chain mail and armor for cats online.

 

Guerrilla Zen Intervention…

I would talk about Boston, but I’d be raining on wet soil…we all are shaken and shocked, and there’s nothing I can say about the incident itself that will be more significant than all that’s already been said.  I will tell you, however, that J knows something has happened that has everyone on edge, and that we are not happy; there is a lingering sadness that comes attached to every shake of the head, and the quick clicking-off of the TV when J comes upstairs tells him we’re disconnecting from something we don’t want him to be affected by.

We are, in a nutshell, chicken shits.  We don’t want J to be touched by the anxiety that this is causing us, and we are hoping to manage it as best as we can without having to explain to him that some asshole(s) set off bombs that killed three people and injured nearly 200 others for reasons as yet unexplained.  We are not trying to cover the sun with one hand, but…we don’t have the tools (or the bald-facedness) to say “but that sort of thing doesn’t happen HERE and YOU are safe.”  This is no longer something that can be guaranteed to anyone, is it?

So our son, who is autistic but not stupid, non-verbal but fluent in body language, has realized that we are being coy about something that is not good, and he’s amped up the love.  Yes.  J is now bursting into rooms to hug us, kiss us, help us with chores, drag us to his side, make us sit when next to him when we’re clearly engaged in another task.  This is not the J-clinginess that we know needs to be soothed for HIS sake.  No, this is not THAT.  This is J making a concerted effort to force us to be soothed so that we know that he knows that our calm is off-balance.

We refer to it as J’s Guerrilla Zen Intervention.  The perpetrator makes an incursion into our territory, seizes our attention and, without so much as a PLEASE, forces us to sit next to him and speak soothingly, reassuringly so that we convey to him that all is well and we’re handling whatever it is.  Somewhere along the way we manage to tell him (and ourselves) that this is out of our control and we need to let it go for J’s sake, and, somehow, we are soothed by soothing him.  It’s almost like taking aspirin for someone else’s headache and having it work…

Ever since the kids were very young, I’ve asked them to take deep breaths when they’re having a “difficult” moment.  I, on the other hand, tend to hyperventilate under similar circumstances, but I try to control it and end up feeling lightheaded because I’m holding my breath and pretending to be perfectly fine.  My children, by some lovely fancy of the Universe, are wiser than I am…they listen to what I tell them and don’t imitate what I’m doing, and then they manage to calm me while I’m trying to calm them.

J’s system works.  Yesterday he made Dada and I focus on the possibility of a tantrum, and we put out of our minds all the details that seem to circulate in the news around the name Boston.  J insisted on music.  J insisted on washing dishes.  J insisted that I start cooking dinner.  J made us fold laundry.  J made us set the table.  J locked poor Miss Zelda in the balcony during a rainstorm that left her drenched and focused us on the task of drying off a VERY HAIRY CAT…  By the time we all crawled into our respective beds, J had managed to keep us away from the TV and the news for four hours.  In a world as connected as ours, that is quite a feat…

J’s emotional connection to the outside world varies from tenuous to strong, but in this case he seems to be more concerned about us, about how we’re being affected by inexplicable violence.  We see horrible things happening all over the world, and it affects us…this happened a ten-hour drive away, in a town where my brother has lived for over thirty years.  The brain processes that differently, I guess.  TGG’s first call was about his uncle, a man he has not seen since he was two years old.

Our commitment at this moment is to not putting J in the position he felt he was in yesterday.  We don’t want him to think he has to round us up and soothe us.  We don’t want him to think that it’s up to him to make this better.  If this has taught us anything it has been that J is a lot more connected now than ever before.  It is not a fluke.  It is not coincidence.  It is not random.  J knows we’re upset.  J wants us to not be upset.  J’s working on improving our state of mind.  J’s making a concerted effort to refocus our attention.

The poor cat???  That was just a happy coincidence, and a wee bit of retribution for all the times she’s disrupted HIS calm.  As far as he’s concerned, if you’re a pesky, furry, over-enthusiastic female with an affinity for jumping on people’s laps and not responding to Slinky-armed efforts to make you go away, you deserve to have the sliding door to the kitchen balcony opened, to be shoved gently with a slippered foot, and to have said door quietly closed behind you while buckets of rain pour over you…

Mama and Dada have a blow dryer.  Mama and Dada need the distraction.  It’s better than a tantrum.  It’s better than WAH-WAAAH!!!  It’s Guerrilla Zen Intervention at its most proactive and creative…

And that is why we love him…

 

 

The Byrds, ganking from Ecclesiastes, said it best…but at your pace, not someone else’s

When my great-aunt passed away in June of 1993, I was outwardly calm.  Every errand and ritual that had to be completed was fulfilled with precision and dignity.  The business of grieving, mourning, internalizing the loss was set aside until the rigorous process of remaining alive and raising a family could be brought back to the level of balance and normalcy that such a task requires.

I was slightly less competent when, five years later, my marriage fell apart.  I girded myself up for the next upheaval: J’s diagnosis.  Of the three events (life-changing events, each in their own way,) the worst one was the last.  I dressed in mourning for my aunt for three months.  People tried to rush me through my sorrow; my mother, as I packed up our household to move to another town, said words I will never forget: “well, that’s done and now you move on and forget it.”  Similar things were said about the demise of my ten and a half year-old marriage.  “Oh, well.  That’s done.  Move on and forget it.”  With two kids resulting from said marriage and the dilution of the person I was (and had to rediscover if I wanted to survive this trauma,) kinda hard to forget a marriage gone awry.

J’s diagnosis was expected.  I am, after all, neither clueless nor blind.  I didn’t dress my body in mourning colors for this.  I didn’t lay down to die.  I didn’t really do much other than pretend like I could handle this and that it was all going to be just fine.  The diagnosis was, yes, a relief, but it was also the opening of a door through which “my child” was leaving and this “changeling” was entering my life in an official capacity.

The creature before me looked like J.  He sure as heck sounded like J.  He acted like J.  He smelled and felt like J.  But the J I had hopes and dreams and aspirations for was gone.  Sounds horrible, doesn’t it?  I am a bad mother, aren’t I?  I suppose I am.  I am saying that, in essence, I lost a child to Autism.  How horrible!!!

I did.  The kid that I carried in my belly for 38 weeks, that I brought home from the hospital and breastfed was gone.  He had morphed in front of me, and I knew that he was somewhat “altered,” but I had clung to the J I knew, and now I was told -like Sophie Zawitowska- to choose a child…only no real choice was given.  I couldn’t really say “I want the old J, please.  This quirky, closed-off, distant person who attaches himself to my breast in spite of the fact that he has teeth and is much too big for breastfeeding, is NOT J and I’d like to return him.”  This child, this labeled and stamped child was my child.  For better or worse.

I don’t know what it’s like to lose a child to illness, catastrophe, accidental death…I have no idea.  I can turn around and look at my son’s body, see his smile, hear his voice, touch his face and know he is breathing and living.  He’s alive.  He’s here.  He’s J.  He’s the J I was supposed to parent.  The mourning process for the missed opportunities has been long, drawn-out, almost incomprehensible to me.  I am constantly having to remind myself that  this is OK, that this is do-able, that this is the way it’s supposed to be.

I love J.  I love him more than words can say.  I don’t love him more because of his Autism.  I don’t love him any less because he’s not the J I thought I was getting.  I simply love him.  I would have loved him even if he’d been “normal,” and had done all the things that “normal” children do to irritate, disappoint, frustrate, annoy, hurt their parents.  That the rites of passage, the rituals of life, the entire ebb and flow of our existence as a family are marked by J, hinge on J, center on J is something we all know and accept, but that doesn’t mean it doesn’t affect us.

Dada and I sometimes have this conversation: he has always known “autistic J,” and TGG and I remember a time when the word “Autism” wasn’t attached to J’s name at all.  I choose every day, and some days it is easier than others, to be upbeat and proactive and energetic about this monkey wrench thrown into the machinery of my life.

Notice that?  I said “my life.”  Like it’s personal.  Like I’m the only one affected.  Like this isn’t happening to anyone else, not even J.  I said that because I’m selfish.  From time to time, I do take this personally, and I feel like it’s MY failure, MY fault, MY problem, MY hurdle to jump over.  I’ve been doing this, officially, for fourteen years.  On March 26th of 1999, I called Dada (who, at the time, was planning to visit me for the first time in fifteen years) and told him “these are the facts.  This is the time to choose if you want to do this at all.  This is the moment when, if you make the wrong choice, your entire life can be altered.”  At the time it didn’t even cross my mind that he’d ask me to marry him; I was thinking of the trauma of being introduced to two children and walking into a family that had just experienced several traumatic incidents in quick succession (hurricanes count, don’t they?)

The rest is history.  Well, the rest is known.  That’s more accurate: you know where we are and what we do, and -more or less- you have an inkling of how we do it.  The moments when we dance, we mourn, we scream, we laugh, we get frustrated…you know we go through all that, and you go through it, too, in your own way.  In your own timeline.  At your own pace.  Where you are and how you are…

None of it is wrong.  None of it is bad.  It’s all yours and you handle it…when you handle it…how you handle it.  We prop each other up from time to time, and we know when to be silent and when to turn away to allow others the privacy of their (seemingly untimely) grief.  Even if you got your child’s diagnosis yesterday, six weeks ago, three years ago, fourteen years ago…grief is allowed, grief is OK, grief will propel you…

At least I have the consolation of stretching out an arm and grabbing J’s hand, hugging him, kissing his nose and being annoyed, frustrated, irritated, entertained, made joyful by him.  And that, my friends, is something that will buoy me forever and a day…  Yeah, if you can’t make it better you can laugh at it, but…you don’t ALWAYS have to, especially when someone else is telling you to get over something that, well, there’s really no getting over because, I suppose, it’s a little bit like walking around with shrapnel in your body.

 

Concealer liberally applied will still find a way to settle in the crevices of your age…

This morning I was reading the news when I ran across a small item with a headline that read something along these lines: “Heather Locklear and her daughter look like sisters.”  From glancing at the photo that appeared under the headline I could clearly see that this was, at best, a mild exaggeration and I clicked to read the text of the note.  It basically said that Ms. Locklear (51 years old) and her daughter, Ava Sambora (all of fifteen,) look like they could be sisters because Ms. Locklear looks AMAZING for her age.  If I had the ability to arch a brow, I would have done it.

Granted, Ms. Locklear looked really good in the photograph, and had I not been wearing glasses, I would have probably airbrushed her with my poor vision to the point where I could agree with the headline.  However…like sisters?????  Ms. Locklear’s hairstyle, outfit, shoes and makeup certainly resembled the youthful style her daughter was proudly displaying, but…like sisters?????  No, not by a mile.  Not really.  Not likely.

I am, by no means, giving up on staying as healthy as I can, but I will confess to you that not even a tub of facial cream applied assiduously every night and morning will prevent the next stage of my life from happening.  You know what will prevent it???  Sudden, irrevocable, fulminating death…I prefer the wrinkly, gray-haired, sagging option.  At the age of forty-eight, my chances of “dying young” are long gone.  My dad (who is in his 80s) would say I died “young” if I abruptly kicked the bucket, but my kids wouldn’t.  It’s all relative, isn’t it?

Remember when “dying young” was a tragedy?  When we heard of someone passing away in their teens, twenties or thirties, we used to say “oh, but he/she was so YOUNG!!!”  People nowadays act like dying old is something to be ashamed of; worse yet, people nowadays act like dying LOOKING ONE’S AGE is something utterly embarrassing.  Of course, we all feel a little flattered when someone acts surprised that we have grown children, but we know a kindness when we hear one.  We KNOW that, when we get home and look in the mirror, our neck will say “yeah, you’re in your late forties and unless you wear a scarf year-round, you won’t be able to fool anyone.  Besides…did you look at your hands????  What about those KNEES!!!???”

If you have the means, resources, power and enthusiasm to try to shape your forty-something body into a reasonable facsimile of its younger self, kudos to you.  I can safely and honestly tell you that I wouldn’t.  A)  I am afraid of needles, B) it costs a lot of TIME that I don’t really want to dedicate to such endeavors, and C) I still know my age regardless of how much I try to convince myself that the loud clacking, creaking and whining are not being issued by different parts of my body.  My kids know my age; they have been looking at me and watching me age for the past two decades.  Like an apple or a mushroom left out on the counter, I have been slowly drying out and shriveling…I’ve not really rotted yet, and -at least I don’t think so- I don’t smell funny.

What am I trying to say?  Aging is not a sin.  Aging is not a tragedy.  Aging, in my case, is the bargain I made with the Universe when TGG was born, and the bargain I renewed when J was born:  “Please, if you let me finish this task that I am setting for myself, I won’t complain about what it does to this young body I am offering up in sacrifice.”  The day I found out I was pregnant with TGG, I could still sleep on my back without pinching any roaming parts of my body.  Nearly 22 years later, I turn in bed and I have to shift things into a more comfortable place.  Horrible, huh???  Breastfeeding J for four years didn’t help matters either, and peri-menopause has been the most recent insult.  (Another interesting article today stated that French researchers have concluded that women really DON’T need brassieres, that -left to nature- our bodies develop sufficient muscle to support our breasts properly.  These French researchers have obviously not seen me jogging along to the Wii.  They’d BEG me to put a bra on!)

I’m not saying give up.  I’m not saying willingly turn into a fluffier, saggier, wrinklier, more gray-haired, older version of yourself.  What I’m saying is that, if you’re lucky, that is what you’ll become, and your children will be there, witnessing it and -hopefully- taking in the work you’re putting into them.    I also read today (it was a slow morning chore-wise, ok?  I did a lot of clicking and reading as I sipped that second cup of coffee that -ultimately- was not a very good idea) about a mom-blogger who wishes someone had told her that parenting doesn’t get easier with time.  I don’t know under what rock she spent her pregnancies, but wherever that was the echoes of “just wait ’til the kid” didn’t reach her.  I got the full version, and I’m grateful for the unvarnished, undecorated account of puke, constipation, night terrors, tantrums, falls, calls from the principal, etc., etc., etc. that was chorused at me by every group of experienced mothers I ever encountered when I needed it most.  I’m only sorry (and yet not) that none of those mothers had a disabled kid because, and this is the honest truth, some of this ignorance that enveloped me has given me much needed hubris, even when it turned around and spit me in the eye.

So…to re-cap:  instead of fighting the pointless battle of trying to delude myself into believing I could be my children’s sibling, I’m surrendering to the reality of being their mother, and looking it.  I commend Ms. Locklear for, even though she no longer looks as much as herself as she used to, fighting the good fight, and putting herself out there for our perusal.  In a sea of middle-aged women who look more and more like each other (because they chose their noses, lips, cheeks, hair color, foreheads and breasts from a book in the doctors’ offices,) I stick out like a run-of-the-mill big toe…the kind that gets a pedicure at home.

I’m good with that.  I know how old my knees are, and my newest and oldest scars, and -because we’ve laughed about some of my most catastrophically ridiculous accidents- my kids know it, too.  Yeah, they’re cool with the fact that I saw Star Wars at the theater, before George Lucas messed with it to make it “better,” and that I saw Neil Armstrong walk on the Moon.  Come morning I’ll still (STILL!) be trying to get my toes and fingers to touch (don’t even go there,) and it will require the help of the Tin Man’s can of oil, but Ms. Lauren Bacall said it best, and this is why it hangs in the entryway of our home: I think your whole life shows in your face and you should be proud of that.