A peri-menopausal woman and a young man with ASD walk into a messy kitchen…

Oh, J and I…we are getting on each other’s nerves this morning.  Only goodness knows why.  No, actually…goodness doesn’t know, but we do…

I think it is a (tenuous) sign of maturity that we have agreed to take a break from each other.  We are both on a timer right now.

It was the mess in the kitchen.  I am not in charge of coffee in the mornings.  I’d say Dada is in charge, but I have the sneaky suspicion that it’s actually the Tasmanian Devil who goes in there and gets things done while I take my shower and drag myself to the dining room.  I generally (and you can blame the time-release caffeine in my morning cup of “revive me I need to be functional” java) don’t realize how messy the kitchen is until I come back down after Dada has left, the beds are made, and J is ready for breakfast.

For us people who drink coffee mornings are very simple, at least Monday through Friday.  We have pressed coffee, frothed milk, maybe toast with butter and jam, or some other sort of quick thing to eat.  If there’s a hot breakfast involved it’s for Dada.  I cannot, in spite of many years living in New Mexico, stomach a breakfast burrito at six-thirty in the morning.    Out of coffee, milk and toast with something spread on it is created a mess that, should such a thing as domestic-affairs CSI exist, would be described as a complex scene.  Remember that scene in The Princess Bride when Prince Humperdinck is reconstructing the sword fight between Iñigo Montoya and The Man in Black?  That’s what I feel like when I step into the kitchen after Dada has gone to work: he ground the coffee here, transported it in the ridiculously-sized container to pour into the French press here, spilled here when the cat jumped on the counter, moved to the dining room table, and poured the water from the electric kettle without turning on the ceiling light…he was lit from behind by the insufficient bulb from above the stove…hence the spill of water HERE, and the wet ground dripping down the side…and so on and so forth.

Please, don’t mutter to yourself that I should be grateful that HE gets up and makes the coffee because I AM.  That doesn’t mean that I have to actually ENJOY cleaning up an amazing mess that is not commensurate with the meal consumed.  The first I do in relaxed lighting (no, he doesn’t turn on the ceiling light,) and with (possibly) Boccherini or Bach playing in the background.  The second I do with J following me as closely as a pilot fish does a shark while making requests for something I’ve already said yes to, and saying GOOD MORNING with every exhalation.  I try to make sense of the kitchen while trying to make sense of six other things, and sometimes I realize that jam hasn’t been returned to the fridge, a cat is meowing loudly and J is running around in very tiny circles trying to keep away from its demands, and the phone is ringing because telemarketers don’t respect the fact that people hate them and don’t want to talk to them AT ALL.

An aside:

Apologies to any telemarketers reading.  I know it’s your job and you have to make a living, but I still hate you when you are wearing your telemarketer cape and invading my mental space with your phone calls.  Yes, I know you have student loans and kids, and car payments, but there is NO right time to call me.  NEVER.  EVER.  NEVER EVER!  And if you are the telemarketer that called the other morning (while I was making eggs for J’s breakfast, picking up plates that had slid out of the dish rack, trying to find the right playlist on J’s iTunes thing, and sliding some bread into the toaster: if you call and say “this is about your Windows,” you totally deserve to be told “they are dirty, but I won’t get to them until springtime so don’t call me to ask about them again.”

And I’m back on the subject.

I think it’s healthy to admit that J and I get on each other’s nerves.  I am not a saint.  I am not Mother Teresa of Calcutta, nor am I some beacon of motherhood that puts all other beacons of motherhood to shame with my efficacy.  Most of the time I really don’t know what I’m doing, or how well I’m doing it.  There are times when I need to walk away from J because I know that his anxiety is going to cause me anxiety, and one of us has to keep it together…this requires a brief moment of “come on!  Seriously?  You are a friggin’ grown-up, lady.  Take a deep breath and get your shit together…”  Sometimes it takes a few brief moments along the same lines.  If there’s hot flashes involved, well, there might not be enough namaste to go around, but I try…

Within the next ten minutes we will be done with our timers, and we will once more stand on the same stage to perform our next scene together.  I think we’ll be ready then.  I’ve agreed with myself that the kitchen is a mess, but it’ll get done when it gets done…probably oh one-ish?  He has agreed with himself that he will take care of the straps on his wrist brace because I have already stated, unequivocally, that I am not going to fiddle with them every five minutes.  We stomped to our corners, we took deep breaths, and now it’s time to mumble apologies, give awkward hugs, and make faces behind each other’s backs.

We’ll be fine.  It’s Friday, and there’s a very small flatbread pizza looming in the schedule for this evening.  All sorts of sins are forgiven when there’s pizza in the horizon, and we know we are “normal.”  In our own way, of course…

I am grateful, and I love my family.  I need more coffee, and the hot flashes suck.  Autism can be a nuisance, and anxiety is a bitch.  But I am grateful grateful grateful and my patience is replenished, and -I think- so is J’s…

Now…to the kitchen!

Lightning storms are exhausting…

My father was an expert on electricity.  I don’t mean that with even the slightest shred of sarcasm.  My father was born, raised and educated in Argentina, and he started working at a young age so, once he stopped his formal education, he continued it through dedicated, enthusiastic reading.  If my father, even as he got older, didn’t know about something you mentioned, he would go seeking information about it.  Phone calls would randomly be received asking if you knew about this, that, the other thing.  If you knew, he would go AH!, and then hang up and try to find out more so he could be better informed than you.  He was competitive, but in a good way…except, of course, when lightning struck.

My parents lived in abodes made of concrete when I was growing up.  I lived with my great-grandfather and my great-aunts in a house made of wood.  Whenever I visited my parents and I had the misfortune of hearing thunder, I knew what was coming.

 

While other parents issued general warnings about the dangers of lightning, my father would launch into a very detailed explanation of why we couldn’t take a shower, go outside, stand in front of the window watching the storm, touch lamps that were flickering, answer the phone…

These, of course, were the days when phone and power lines were not buried, except in bigger cities.  Our family didn’t pass lightning storms watching TV, even if the power had not failed.  We also didn’t walk around barefoot.  Or touch appliances.  Or cookie sheets.

I know there’s some science in all his warnings.  I also know that Snopes and Mythbusters have debunked some of it.  Because I grew up in a place where tropical depressions, tropical storms and hurricanes are a yearly occurrence (sometimes in bunches rather than singles,) storm preparedness is a thing for me.  Weather awareness is something I preach.  If anyone in my household hesitates to respond according to plan, I turn, yes, into my dad.

The one bastion that will not give an inch is J.  It turns out, ladies and gentlemen, that J’s TV room is THE safe room in the house.  It’s in the basement, it has concrete slab on three sides, no window, and is in the center-back of the structure.  It also has a closet that, should things get really testy, holds all three of us safely.  There is bottled water there.  There are pillows, flashlights, and things to entertain ourselves with should we have to stay in for a significant while.  There is, for crying out loud, a ball pit.  I can still, while the power is on, get a good wi-fi signal to follow the weather reports.

J is insulted that we would, how dare we, pick his bat cave for our safe room.  This was in evidence yesterday when we had a Tornado Warning.  We calmly, because that’s the way to do it, strode into J’s TV room and planted ourselves in the middle of the room.  J, who was sorting his movies into piles (a classification system that makes sense only to him,) turned and looked at us as if we’d just burst in with flaming torches in our hands.

 

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“We are just going to sit here unobtrusively,” we said, and Dada grabbed a storybook while I checked the extent of the warning on the other iPad.  “It expires in fifteen minutes,” I announced; “we’ll be out of your hair before you know it!”  I looked at J and he was not particularly thrilled by the idea.  The next fifteen minutes were peppered (liberally) with the word BYE, and we basically ignored his desire to kick us out of the safest place in the house.

Trying to explain a tornado warning to a person who doesn’t understand weather except as something expressed by music is not easy.  Vivaldi?  Yeah, yeah…it’s a little more complex than that.  Karen Carpenter was not far off the mark when she sang that “rainy days and Mondays” always made her sad.  The problem is that we have come to, as a culture, relate certain atmospheric events with certain emotions.  Eeyore is followed around by a raincloud.  A rainbow crosses the sky when someone is happy.  The sun shines and birds chirp happily when the moment is joyous.  Lovers run across across sunlit flower fields.  The wind blows fiercely and the rain batters the windows when someone is in searing pain.  I tried to figure out if Twister was a good way of introducing J to the concept of why we need to go into that room, but then I realized that the movie ends with a sunflower field where a tornado has cut a swath, but all else pretty much stands, gloriously drenched in bright, hopeful sunlight.

I can explain weather to J. We have sat there looking out the window as snow falls, heavy and slow, building up around us.  We have sat there water racing down the blacktop and into the drains as the world seems to melt with the rain.  We have watched sun break through clouds, and warmth suddenly suffusing the air after it’s been cloudy all day.  These things, in J’s mind, don’t always go along with the sort of music that we -with our standard-issue brains and conditioned minds- would choose.  I have seen J happily prancing along to the school bus in sunshine while humming “Singing In the Rain.”  I have witnessed him bouncing around in the garage while rain falls abundantly and “Walking On the Sun” is streaming from his iPad.  He has sat in our very sunny, very hot back patio, shielded by the umbrella as bees buzz from flower to flower around him, while listening to “White Christmas.”  

After the storm had passed (and we’d rescued the tomato plants that had been knocked over,) I sat J down to tell him about tornados and why we need to sit in his TV room to be safer.  J’s view of the world is different from ours.  His bubble is multifaceted, multicolored, multi-textured, but it has very little to do with the other bubble, the outside one…the one we manage, deal with, handle, convey to him.  There are things he just doesn’t grasp, even if they are important, crucial, essential.  The Wizard of Oz is a magical adventure that starts with a tornado…J probably thinks “hey, guys, that sounds like fun…you go right ahead and do that while I sort my movies in private.”

My dad’s system won’t work this time.  Think, think, THINK!!!!

 

 

The not-so-cute or uplifting list…

From time to time you see online one of those “what parents of children in the Spectrum want you to know.”  I’ve read them all.  I agree with some of the stuff on there; we want you to know our children are not unintelligent, unaware of what is being said about them, blah, blah, blah.  That is a blah, blah, blah from a place of love and respect.  I don’t want you to think I don’t appreciate what people are trying to do with these lists and essays.

There’s stuff I’d like people to know about J, he of the firm placement in the Autism Spectrum, that doesn’t quite “fit” the usual pattern of these lists.

  1.  J is a pain in the ass.  I love him, but this is true.  When J wants what he wants, J is a total hard-ass about it, and it’s only through the lavish dispensing of patience and firm negotiation that we can get him to not be a total asshole about things he wants NOW.
  2. When J doesn’t like you, he will NEVER like you.  He will, at best, tolerate your presence, but he will not last very long, and he will make sure you KNOW he doesn’t like you.
  3. We will say “oh, it’s only he gets used to you.”  We will be lying.
  4. J’s concept of privacy does not extend to other people.  He WILL walk into the bathroom while you’re on the toilet, and he will rush you to finish.
  5. Yeah, he knows how to unlock the dinky indoor locks with a butter knife. He will also use his thumbnail.
  6. While incapable of reading a calendar or understanding the concept of time, J will know when it’s not a day for Dada to be home.  If we look too relaxed while having our coffee and watching Reading Rainbow (don’t judge us…the news was too stressful so we got rid of cable and LeVar Burton makes us happy,) J will get irritated, march upstairs, pick an outfit for Dada to wear to work, and then unceremoniously hand him the can of shaving foam.  This is, in J’s world, the equivalent of handing the Black Spot, or a fish wrapped in newspaper.  It’s an announcement.  It’s an ultimatum.
  7. J’s sartorial sense is either very good, or he has memorized Dada’s work combos over the years.  He never picks anything that clashes or looks like it’s meant to be worn for an occasion other than work.
  8. If J doesn’t want to go out, J will not go out.  You can tempt him with anything you can imagine, but he will not budge.  Even if you’ve made plans and are really excited about them, you will find yourself with egg on your face…the kid will not budge.  He’s not interested in making US happy; he just wants to be happy.  If that means he gets to screw us out of an outing, so be it.
  9. J’s single-mindedness can be truly irritating.  This is made worse by the fact that, at times, he refuses to communicate when he’s obsessing about something.
  10. There are moments when being J’s parent is truly exhausting, and we yell at each other because we cannot yell at him.
  11. Some of the quirks can really drive us nuts.  The flicking of the fingers.  The tapping of the head.  The band-aids.  The turning the lights on and off three times, disorienting us old people who tend to suffer from vertigo…
  12. J cannot abide seeing the cell phone charging.  It has to be putawayputawayputawaynownownownow…  At least he doesn’t do it while out and about to other people…

The truth, and I know this sounds horrible, is that he pisses us off once in a while.  Like him, we have our good and bad days, and there are times when we are just not in the mood to do what has to be done.  We still have to do it.  We do it while gritting our teeth.  We do it while cussing under our breaths.  J knows when we’re angry.  I think it’s fair that he knows, even if he cannot always understand it.  I think that J deserves to know that he is as much of a human as we are, and that these difficult interactions are part and parcel of the whole gig.

J is persnickety.  J is demanding.  J is obsessive compulsive, and annoying.  He wants attention, and then he doesn’t.  He wants affection, and then he doesn’t.  He is careless with us; he loses his patience with us (sometimes very quickly and for no apparent reason,) and he hurts our feelings.  He always thinks he’s right, until he realizes he’s been wrong, and then he quickly forgets it.

We don’t know, for a fact, that J loves us.  That’s the nastiest bit of all.  We know he is used to us; we know he feels close to us.  We know that J recognizes us, and he feels bad when we’re upset or sad because of him.  We know he loves to hug us, and he likes our fish kisses and displays of affection.  We know that he trusts us, and that he likes -for the most part- having us around.  Does that mean he loves us?  I could go into the whole Fiddler on the Roof/Tevye and Golde thing and sing “Do You Love Me?”  I could argue that love is different things to different people, and that to J it is something along the lines of what we see from him every day.

I would like to tell you that it doesn’t crush us to think that we are simply constants, and if we’re gone we can be replaced.  We like to think that, like us, J spares a few moments each day to be thankful for the chance to be a family, or that he misses us and is glad when we reappear in the scene after being gone a while.  The truth, my friends, is that we don’t know…

What I want people to know, for the most part, is that -yes- J fits into all those lists that say he’s special, and has abilities, and sees the world differently…blah, blah, blah.  I also want people to know, nay, UNDERSTAND that this shit isn’t easy, and that we’re human and fallible and short-tempered at times when it’s most inconvenient because it doesn’t help matters.

Yes, J is awesome, and lovable.  But he’s also this complex human being who -d-uh!- has huge issues trying to interact with us.  Even WE think “shit, does he have to be so…argh!…all the time!”  It’s not pleasant sitting on the toilet in the dark because he wants the lights out NOW.  It’s not pleasant sitting on the toilet with him walking in and demanding action NOW.  It’s not pleasant that he feels entitled to invade our privacy, take up our space, rule our life, alter the course of plans, days, you name it.

It is what it is.  We love the kid, but there are moments when we hate this situation.  In an alternate reality, J would be living by himself, not wanting to deal with parents who sit on toilets, or make plans that HAVE to include him. It’s not that we didn’t raise him right…it’s just that it is what it is, and no amount of training completely alters the “what it is” of it…seriously.  At most we’ve managed to get him to not open the bathroom door AS abruptly.  Or we’ve managed to get him to wait (after yelling “I’M ON THE TOILET” so loudly that the neighbors know what we’re doing) outside the door, only to open it and find him RIGHT THERE…FACE TO FACE WITH US…

We love, respect, admire our son, but he can definitely be a hugely self-centered jerk sometimes…  SO, yeah, he can be cute and charming, and funny, and entertaining.  He can be uplifting and inspiring, and awesome and warm-ish.  He can be affectionate (it’s usually because he wants something…how like every other kid is that?,) and he will hug us (sometimes a little too hard,) but…

it is what it is.  Not a very uplifting list, but…sincere?  Honest?  Slings and arrows come my way…

Counting down to no-med days…

A quick inventory of the Risperdal bottle, and a cautious reading of its label has confirmed that J’s last dose of med is on Saturday, December the 12th at some time around 9 a.m.  Based on previous experiences, and on extremely intricate calculations that I cannot divulge because they involve very convoluted logic, J will have a crappy Second, Third, Fourth, and possibly Fifth Day of Christmas.  By the time he goes on Holiday Break, his teachers, aides and classmates will have earned a much deserved break from J’s angst and moodiness.  (Memo to me: make the gift cards slightly nicer this year…call it “appreciation” but really mean “atonement.”)

It’s not that I don’t have faith in our ability to navigate this transition.  It’s not that I’m not sure J is pretty much ready for this.  It’s more that I’m always wary of the sudden (yet gradual) shift in the brain’s chemistry when an outside element (that has been there in greater and then sporadically reduced quantities) over the course of nearly six years.  There’s always that iffy moment when J’s anxiety peaks because his body is looking for something that is no longer there.  Those three or four days can be grueling for him.

In preparation for this, we are trying to keep things organized, and we are hoping to create a solid routine for J with plenty of opportunities for escape if he is inclined to be on his own and away from us.  Insufficient attention from TGG continues to be a problem, but we cannot do any more about that than we already have done.  Last Wednesday TGG took J to the movies, and J ended up paying for the pleasure of his brother’s company; he bought the movie tickets and the popcorn and soda.  Of course, J was over the moon with joy because his brother was finally paying attention to him, but…

Dada is up to his neck with work.  The project he’s been engaged in since he got hired at the hospital is supposed to be done by the first of the year, but between the regular work each team member has to do and the tasks involved in completing this process, things have not been going as smoothly as they should.  Long days, traveling, stress…it is shaping up to be quite a lulu of a holiday season.

The Thanksgiving break is a few days away, and we’re mostly ready for the holiday.  TGG has to work when the store opens at six, and Dada will forgo the traditional Friday day off to go in to get things done for his project, but that’s something we can deal with.  I will probably engage J on decorating wrapping paper for Christmas.  I am planning on a little forest of Christmas trees (made with paper mache cone shapes and tissue paper) for the living room, and J loves doing those things so we’ll work on that, too.

I am trying to keep things low-key because I have not been feeling well.  It’s nothing serious, but I’ve been less enthused, energetic, and sprightly than usual, and I think I need to take things down a notch until I’m feeling up to my usual.  The Christmas shopping is 85% done (it’s always the little things that jumble me up,) and we have our menus clearly planned for all upcoming holidays.  I’m skipping Christmas cards, and I’m going to focus on making our Christmas a nice quiet one that will be conducive to J adjusting to life after Risperdal.

There WAS life before Risperdal, and parts of it weren’t so nice, but I think its time is up.  Let’s face it, if we compare J to a car, he’s been driving around on fumes of gas rather than a full tank for a while now.  I’m sure that there will be not-so-nice parts to life after Risperdal, but that can be said about everything in life.  My job in all this is to try my best to help J face yet another transition in life.  That I am taking it slowly, calmly, and trying to not overexert myself should not be construed as being unprepared or being cavalier about it…

We are still wearing a ton of bandaids, but we now choose to go out without taking our brace with us.  We have even gone out for excursions without the band-aids. I don’t foresee (especially with the anxiety that overtakes him when the med is reduced) that the band-aids will go the way of the boxing gloves, but I do foresee that J will make entirely personal decisions regarding certain things he carries, wears, clings to, and so on and so forth.

If there is one thing I’ve learned about J it is that he is a lot more malleable than we sometimes give him credit for, and I am glad that he has become increasingly comfortable with being stubborn, and with negotiating.  Does that make sense?  I am glad that my son can now stick to his guns without being aggressive, and I am glad that he can negotiate without feeling defeated.  Whether it’s about band-aids (negotiating longer and longer periods without them,) or a pair of pants that he was adamant about not wearing, or accepting that he either has his two slices of pepperoni and one slice of cheese OR his cookie OR his two squares of chocolate, J has become an easier person to live with over the past four years.

Furthermore, the change effected in his relationship with food over the past two years can only  be categorized as astonishing.  The same kid who would only eat Ramen noodles, mac and cheese and pizza now happily picks the scallions out of the Pad Thai and eats them first.  I have placed a ramekin with broccoli, cauliflower and carrots in front of him, and J has consumed them with a very modest amount of Ranch dressing.  That he loves fish, eats legumes without complaining and drinks apple juice (something that used to cause melodramatic bouts of gagging and near hurling in previous years) is cause for rejoicing.

We’re in good shape.  Anticipation, but the good kind, is in the air…

We’ll see what happens next…….

Call me crazy…

I have, from time to time, toyed with the idea of regretting my decision to be a stay-at-home mother, a professional mother, a mother for the ages.  This hypothetical regret is so very fleeting, and so very banal that it doesn’t even sit in the back of my mind.  If you ask me, I will tell you immediately and unequivocally that I have loved being a mother, and that I consider my dedication to my children, the most important thing I’ve ever done…

I actually no longer feel that way.  I feel like I made a terrible decision, and I failed miserably.  And, no, this is not a flight of whimsy, a “oh, poor pitiful me” moment.  This is a resounding call from deep in my gut.  This is like a stone bouncing violently against the walls of a deep and wide metal container…clank, clank, clank…

This is not about J.  I fail J every single day, and I know it.  I am at peace with this because parenting an individual in the Spectrum, as I’ve mentioned many times before, very much like Sisyphus and his rolling boulder.  More often than not, I am run over by the boulder, recover, chase after it, and then start up again.  As they say out there: it is what it is.

My issue is with TGG.  Our issue.  We are all pretty much overwhelmed.  Dada and I spend so much time trying to figure out TGG that we have realized it’s taking time away from J.  That, in of itself, is a clear indication that something’s gotta give.

We have been, as far as parents go, far from perfect.  We’ve tried to be encouraging, understanding, supportive, loving, caring, patient, all while trying to foster in our children a sense of self and the proper environment for maturing at the proper pace.  I’ve made Halloween and theater costumes; I’ve not missed a single performance, parent-teacher conference, doctor’s appointment, summons to the principal’s office.  I’ve kissed boo-boos, dried tears, said “buck up and try again” when needed.  I have been very responsible as a parent; I’ve taken this whole process seriously.  I married a man who takes it seriously, too, and if we have been stern from time to time it’s because we have had to be.  We set curfews; we grounded people (yes, even J…not that it worked particularly well,) and canceled privileges.  We also struck a balance between the practical things and the fun things.  We’ve always encouraged our kids to talk to us…even if we don’t like what they have to say (or sign.)

In a very broad sense, TGG has been an awesome kid.  He never really got into trouble with the law, although some neighbors once called the cops to say he had thrown an egg at them.  The laws of physics proved to the cop the improbability of that having happened.  Another time, some friends who were in the car with him pointed a BB gun at other vehicles, and the cops were called.  They were quickly caught…because TGG drives like a little old lady.  The other kids, who had previous legal issues pending, were carted off, and TGG and J (who had just been picked up at school) were sent home with a stern warning.  There were several instances of underage drinking that we were not particularly pleased about, and we certainly didn’t go easy on him then.  The cure for that was pretty much turning 21.  There was the pot smoking we never caught him doing, but being former young people we clearly recognized, and that, too, went away.

The main problem with TGG is that he hardly ever finishes anything.  What he finishes, he finishes with the least amount of effort possible, and with the least stellar results imaginable.  TGG barely graduated from high school; the class that almost sank him?  BAKING!  TGG almost finished his EMT certification course.  He choked on the next to last test…and that was the second time around taking the course.  (When I say choked, seriously, he was totally overconfident and underprepared for the test…and once you failed a test for a module, you were out like yesterday’s leftover fish.)  He did finish his Medical Assistant certification course, and he passed his test, but…his grades dropped vertiginously once he “fell in love.”  That romance lasted six weeks and resulted in one grandchild…

We didn’t kill him when we found out, via misdirected text, that he was about to become a father.  We were understanding.  We were caring.  We were patient.  We were supportive.

TGG loves his kid.  His son, though, is not a priority, and -worse yet- he’s not a driving force in TGG’s life.  TGG hasn’t yet understood that having a child changes your life, and that you have to start thinking like a grown-up and make difficult decisions.  TGG still wants to have his cake and eat it, too…

When TGG decided to go back to school to start working towards a degree in Nursing, he was motivated, and we were thrilled.  We paid for his classes and books; we told him not to worry about rent or household expenses so that he could switch to a job that would accommodate his class schedule without putting too much strain on his finances.  We helped him reorganize his room, and we made sure he had the clothes he needed for his new job at Target.  During the time when he wasn’t yet getting paid, we made sure he had gas money.  We made sure there was dinner served for him when he got home.  We took over all the things he used to do with TGG.

And then…

He has fallen in love.  Every single person in the planet deserves to have someone who loves them, and who they can love.  Every single person deserves happiness.  Good judgment often flies out the window when it comes to these things, and it certainly has in this particular case.

TGG has “fallen in love” (and other things) with a very young single mother of two.  When he’s not at work or at school, all he lives and breathes is this person.  She is the center of the universe because she is “patient” and “nice.”  We, on the other hand, are demanding and he doesn’t know how to please us.  We explain to him, ad nauseam, that we want him to study, to work on getting a decent footing before he starts running into the future like a desperate linebacker during the Super Bowl…and without a helmet.  But he’s in love.  He’s getting two Ds, one C and an A (in very basic classes, mind you…this isn’t even Nursing coursework,) and he doesn’t know why this is something we might be worried about.  He had to take the entrance exam to the Nursing program…he dragged his ass for months, and then he passed everything but the Science.

He doesn’t understand what we “want.”  He doesn’t know what he could “do” to make us stop worrying.  I’ve stated my position clearly: it’s time for him to move out, face the world as it is when your parents aren’t there to catch you when you fall, and learn a little bit about what it takes to be what we are: grown-ups.  He thinks, bless his soul, that I’m bluffing.  The fact of the matter, and hate me if you must, is that I am NOT bluffing, and I am ready for my partially-empty nest and a little more peace of mind.  Rather, I am ready to worry about him from a distance, without actually seeing the way in which he thinks everything will work out just right if he just lets things happen.

Am I wrong?  Am I a bad parent?  Am I being mean?  Am I too old-fashioned?  Am I positively medieval?  Is it ridiculous of me to wonder how two twenty-somethings with children from failed relationships can jump so very quickly into a potentially child-inducing situation?

This affects J.  I know it shouldn’t, but it does.  J loves his brother.  J misses his brother.  His brother has barely given him a second thought in the past few months.  TGG spends more time with the girlfriend and her children than he does with his own kid.  Am I stupid to think that this is just not right???  Didn’t he learn from the heartache his father caused him with similar behavior and attitudes?

Our suspicion that he has Asperger’s is being solidified with each passing day.  There is a disconnect there.  There is a lack of emotion.  HE can’t seem to read the signs that we so clearly put out…so very clearly…oh, so so clearly.  He’s just baffled by our frustration and disappointment and concern.  Last night I blew up and told him I’m done, and I mean it…I can’t risk a stroke like my mother had at 56 and my brother had at 55.  I have J to think of, and TGG is, after all, a full-fledged adult…

Any thoughts?????

At long last, I resurface…

Greetings, one and all!

Yes, yes, I know I’ve been lost and not really missed, but I’m back.  It took almost a month, but I have all my ducks in some sort of row (not a straight or well-behaved one,) and I have time to sit and talk to you.

First and foremost, J is doing well.  The Band-Aid Fixation continues, but we now spend more and more time without the wrist stabilizer or the band-aids.  On one particularly happy occasion, we not only didn’t have the band-aids or the wrist stabilizer, we also forgot Slinky in the garage for about three hours.  I had to remind him that he’d forgotten…a joyous moment and a d-oh! moment all rolled into one.

A few days ago we visited our trusted friend, Dr. Psychiatrist.  J was well-behaved and happy throughout, and we discussed removing J’s med completely.  This, ladies and gentlemen, is about to happen…well…as soon as we run out of the med and refills already on queue.  We are thinking Christmas will be, to put it mildly, interesting.  I am sure that there will be some jolts and bumps to navigate as his body lets go of the very last bit of added chemicals, but that’s the way it has to be.

With every passing week the end of J’s life as a student gets closer.  There are 229 days until the last day of school…of those only 128 are actual school days, and we haven’t factored in snow days, or early release days.  The clock is ticking, and it’s neither stopping nor slowing down for our benefit.  The days of J as a student are numbered…

Yesterday we received this year’s version of the graduation announcements.  I thought to myself, as I looked at the envelope, “at least this is the last year when I will cry when I get this.”  We all know, because I make no bones about admitting it, that this is all very bittersweet for us.  J’s school picture, the last one ever, was absolutely spectacular.  He has finally mastered the art of smiling for the camera without looking like a boxing glove is going to come out and smack him.  We hung this version next to the framed proofs for his first school picture ever.  The contrast is marked: on the first a tiny, nearly-bald, skinny kid looks confusedly at the camera, and in the sixth frame you can tell he’s just melting down completely.  They never sent us the actual picture…they just gave us the proofs.  We framed them.  They’re so…J!  Next to it, a portly, handsome, hairy young man smiles gently; his goatee leans to the right and his eyebrows look unruly, but he is handsome and he’s loving the attention.  We’ve come a long way, baby!

Attending graduation is out of the question, of course.  J could not possibly deal with the overstimulation involved in hundreds of students doing a processional and then sitting through a ceremony that won’t last ten minutes.  Needless to say that the cap and gown won’t be his favorite thing to wear.  An alternative must be concocted out of thin air, then…something that will be ceremonious enough to mark the end of an era and the ushering in of a new one.

I’ve suggested the So Long, Farewell song from The Sound of Music performed by teachers, aides and admin personnel, but I don’t think they are keen on learning the choreography, wearing the costumes and leaving the room in any semblance of order.  The end-of-school-year picnic his class celebrates every year will have to do, but I think we’ll try to throw something in there to make it a clear message that this is J’s last ride with his class.

Our family is undergoing changes.  Some of them are less dramatic than others.  We are starting to look, in earnest, for a house to buy…or, at least, for the type of house in the type of neighborhood we’d want to settle in for the next fifteen years or so.  We are hoping TGG moves out soon; this might be a tricky thing to achieve because he is not really concentrating on school as he should (he is “in love”,) and he makes barely enough money to pay for the things that are obligations.  We, the parents, feel the effects of aging…the creaking, cracking, impatience, etc.  Acid reflux has become “a thing” around these parts, and we see it getting worse before it gets better.  That J is almost out of school is the biggest change of them all; that he will be out of school and med-free is an even bigger change.

I confess to you, as I have to Dada, that I am not torn about TGG finally moving out.  I am really looking forward to it, in fact.  That is as close as I will ever get to having an empty nest, and it’s taking very long in getting here.  TGG, at this point, needs to go off on his own, and learn from his mistakes, and I am totally ready to close the door and wave bye-bye.  It may sound mean of me, but sometimes we don’t let our kids grow up because we are there to fix things.

My situation with J is the absolute opposite, and yet it’s the same.  While I am anxious about the prospect of no school forever, I am also looking forward to seeing where we go from here.  In a lot of ways, I feel more confident about J hitting his stride and maturing more smoothly than TGG has.  Maybe, just maybe, we’ve always pushed J more because J has more hurdles to overcome, and TGG doesn’t see that we’ve been exceedingly nice and patient with him…and takes advantage of it.

But I’m not here to gripe about TGG.  I’m here to tell you that we are doing fine, and that we are moving forward.  I promise (or threaten?) to not stay gone as long as I have recently.  It’s just life, you know, and acid reflux…and 24 year-olds who don’t quite “get” why their parents are impatient with the choices being made.

But I’m here…it’s all goodish.  You’ll see…

I have a lo-vely bunch of band-aids

For the past two months we have been contributing amply to Johnson & Johnson’s bottom line.  J will buy bandages from generic brands, but his first choice will always be Johnson & Johnson.  I’m telling you this because it is a far better indicator of Johnson & Johnson’s steady performance than any broker could give you.

You’re welcome.

If I told you that J wears a total of 12 unnecessary bandages, you’d think it’s excessive.  It is.  Trust me: one bandage is one too many.  They are covering nothing but totally healthy flesh.  Well…no.  Right now they are actually covering flesh that is traumatized by the light of the sun.  Nicole Kidman and her on-screen kids in The Others had a better relationship with sunlight than J’s hand does.

The timers have been trotted out to make sure that he takes the bandages and thumb immobilizer off for increasingly longer periods of time.  Insistence on his part only makes me more determined to make him wait.  We have had a couple of face-offs about this, but I have managed to prevail.  At school he doesn’t bother with bandages at all…he gets there and is so busy that he doesn’t give it a second thought.  I have seriously considered some sort of Sisyphus-like tasks to keep him from pointing at his hand and repeating “band aid” until my head starts spinning and I give in to his demand.

Yes, yes, I know.  I should be able to easily resist, but…autism…repetition…obsessive-compulsiveness?????  There are days when it’s easier than others.

A few nights ago we had a small disagreement regarding the band-aids, and by the time someone told me “well, I just put them on him after his bath, but I didn’t put them the way he wanted them” things had become testy.  On top of having had to stay home with a cold, J was seeking comfort from this part of his routine.  Someone (not naming any names…cough…Dada…cough) had gone off-book, and that had caused a problem.

The problem wasn’t so much that the band-aids were in the “wrong” placement.  The problem was that no explanation was offered for the change.

This is what I have learned about J over years of parenting him: if you talk to him, even if it doesn’t seem like he’s listening, he will take into account that you’re putting an effort.  You might not convince him that what you’re doing is a good thing.  You might not persuade him to do things your way, but he will factor in that you’re trying to tell him something.  Furthermore, he understands a heck of a lot more than we sometimes give him credit for, and he likes it when we explain things to him.

Dada’s reasoning had been that J’s skin was dry, and he wanted it to heal a little by letting it breathe and putting lotion on, but he didn’t explain this to J.  He unilaterally made the decision and expected J to instantly accept it.  J, who can be tremendously polite when he’s so inclined, accepted his dictum until it was bedtime, and then he tried to negotiate fresh band-aids with me.  There is absolutely nothing worse in the field of parenting than a lack of communication compounded with insufficient information.  Dada told me “no, I just put those on an hour ago,” but he didn’t tell me he hadn’t told J WHY.

J got scolded.  J got upset.  J asked again.  J was informed that there were no more bandages to be had that night.  J threw a tantrum.  Mother (not proud of this) was intransigent and said an unequivocal NO that made matters worse.  J pounded the bed with his fist.  Mother (not proud of this either) told him to stop being such an asshole, pulled of the “stocking” that keeps the bandages in place to show him how he had NOTHING to complain about…

And then Mother turned around to face Dada and asked (as calmly as was possible at nearly midnight after a miniature version of an autistic meltdown) “what did you do????”

“Me?????????  He’s the one having a meltdown!!!!”  Oh, that’s mature.  “Well, his hand has a dry spot there and I was going to let it breathe!!!!!!”  Did you tell him that?  “WHAT????”  Ahem.  Did you explain to J why you were doing what you were doing?

….

….

….

I apologized to J for having overreacted without knowing why he was asking for more bandages.  I applied lotion to the offending spot, reapplied his bandages, put his “sock” back on, and gave him his thumb immobilizer (which, by the way, has about a week of life left in it…it’s falling apart.)  I then kissed him goodnight, left TGG to read Mouse Soup (a story that we all groan when it’s our turn to read and it gets picked,) and pointed Dada in the general direction of our bedroom.

I confess we were both pretty agitated by then, and the conversation about why J needs to know what we’re doing and why was a lot more animated than we would have liked. It’s not unusual (or, at least, I don’t think so) for couples raising an autistic individual to sometimes take stock of the percentage of responsibility they each shoulder at one point or another.  Dada immediately jumped to the conclusion that I was telling him HE doesn’t do enough simply because I told him “you don’t COMMUNICATE enough with J.”

Dada will tell you that 95% of our arguments as a couple are based on semantics.  Like I explained to him about J: listening is necessary.  J responds to what we say, and to how we say it, and we need to make sure that we take that into consideration.  What I mean by communication, I told Dada, is to not take for granted that he doesn’t understand us.  Dada admitted that this is sometimes hard to achieve, and I told him “why do you think I always look like I’m talking to myself???”

So we have a huge inventory of bandages, and J navigates the supply closet quite well.  Dada is now more adept at remembering to say what he’s going to do, even if J seems to be looking off in the distance at some very entertaining thought he’s turning over in his mind.

Next month we’ll go back to the psych, discuss the med, talk about the many “crutches” J is carrying around, and we’ll refocus our perspective.  If I can’t get rid of the abundance of bandages, I guess I’ll have to crochet an extra large mitten for his right hand…

C’est la vie!