Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents

If this is Spring Break, cold temperatures must be returning…change is in the air.

Seventeen degrees this morning.  The high should (SHOULD being the operative word) reach 39; I’m not holding my breath for that because the other day we were supposed to have a similar pattern and it didn’t pan out.  Yesterday morning, as we packed the recyclables into the car, we realized that a) it was snowing, b) the wind was blowing with a certain unexpected chill in it, and c) it was downright you-need-gloves-a-scarf-a-hat-are-you-wearing-only-a-sweater cold.  Recyclables dispensed with, we rushed home to make tea, and stayed indoors the rest of the day until J went to the gym with TGG.

It is the Monday of Spring Break, and we have our appointment with the psychiatrist this afternoon.  After sitting through his first IEP ever (I forgot to check off the box that said he didn’t have to be there,) J was none the worse for wear.  He needed a timer to remind him that this meeting had a finite time allotted, but he actually did very well for the hour and fifteen minutes it lasted.  He did this, mind you, without his hats.

When Dada walked into the conference room J had a brief moment of anxiety.  I’m sure he wondered if he was in trouble (parents and administrators and teachers in a confined space have that vibe about them,) or if we were trying to build a smoke screen to disguise a trip to the doctor.  Once we clarified that we were there to talk “about school,” J relaxed with the help of his iTunes and headphones.  He wasn’t so distracted from our purpose that he didn’t react when the Speech Pathologist said “sometimes I wonder if he’s just giving me the run-around.”  This elicited a look that clearly stated “who???  Me???” and made everyone in the room laugh.

We finished our meeting just in the nick of time, and managed to beat the traffic of school buses, parents and students with vehicles trying to exit the parking lot at the same time on a Friday afternoon.  This was shortly before 2:25 in the afternoon, and we didn’t actually make it back home until almost 5:15.  By the time we sat down to eat the pizzas we grabbed on the way home (I wore heels and grown-up clothes, people, and sat through a meeting and did the shopping…I wasn’t going to cook,) we realized that J had been without hats since before one o’clock, and that he wasn’t going to put them on until he was done with his dinner.

That, my friends, is what I’m taking to the psychiatrist this afternoon.  J can adapt to more situations now with greater ease than he ever had before.  J is very self-aware, and requests his band-aids to remind himself of what hitting his head can do.  J has accepted changes to his diet with a positive attitude.  J doesn’t fret about things that would have pushed him over the edge because they don’t fall into a pattern that is comfortable for him.  J, in fact, has known since Saturday morning (when we updated his schedule for the week to reflect Spring Break) that he is going to see the psychiatrist today; the only hesitation he has shown has been brief, and easily managed by reminding him that “this is the talking doctor; they will check your blood pressure and your weight, and then we’ll just talk for a bit and come home.”  With that, and just a few repetitions of it, he has accepted that it’s part of today’s schedule.

I think we’re ready to cut another .25 mg from his daily dose of medication.  Dada agrees.  J’s teacher, who deals with his ups and downs in a totally different environment, agrees with us.  In spite of the SIB J displayed at different times through winter, we are fairly sure that he has more control of his emotions now, that he is starting to understand that he CAN exert restraint, even if he doesn’t succeed 100% of the time.  In support of J’s newfound but still iffy self-control, I’m not successful 100% of the time either.

We don’t expect miracles.  I think, if we’re lucky, we experience a dramatic development that results from what at times appears to be pointless efforts on everyone’s part.  We don’t think things are sinking in, or that they won’t take root in J’s mind, but then they do.  It’s not that we don’t believe J is capable of learning the many layers of things we try to teach him, but rather that we don’t know for sure that we’re going about it in the right way.  Learning by rote CAN be difficult, especially when there is much to learn; actually comprehending what is being repeated almost to satiety is even more difficult.  There has to be, as it were, a light switch that goes off in J’s head, when it all makes sense and he can connect all the many, widely scattered dots that we’re drawing for him.

This weekend we looked at rocking chairs for the patio.  J liked one made of teak that we saw at the big box store where we are members.  It is a nice, sturdy chair, and he was comfortable and happy in it; we will get it for him in a couple of weeks, when we’re a little more certain (weather-wise) that he will enjoy sitting outside.  We also found a nice little indoor/outdoor rug for his patio area, and this week we will be working on starting seeds for the garden.  While the weather may not cooperate, we’re not letting this stop us from planning for summer.

Little by little we make progress.  Yes, once in a while, we take a step back, or we stop, or take a bumpy shortcut, but we’re making progress.  A school principal once balked at our statement that we knew J would never be a rocket scientist, taking this as a statement of our lack of faith in J’s intelligence.  We have very little doubt that J is very intelligent, or that he has trouble accessing the stores of knowledge he possesses through traditional means.  Our main concern, because J has challenges that make his progress a little more difficult than one would want, is that he will make progress…period.  So while J may never be a rocket scientist, we do work on making him as independently capable in as many aspects of his life as we can.  Like the transition from Winter to Spring, this is taking time, and a rather circuitous route, but we’ll get there…wherever “there” is…eventually…

Now to make this new med reduction work…

The brownies with the green stuff in them…no, not THAT green stuff!

J and I made brownies yesterday, and we did it before Dada and TGG got home so we could surprise them with a) there’s dessert!, and b) what’s in the dessert.  TGG walked in first, and eyed the snack with suspicion, but that was only because they didn’t look like brownies made from a mix, and the kitchen was clean as a whistle.  He ate a brownie, liked the texture, said they were good, and then asked “what’s wrong with them?”  I told him.  He was stunned.  He ate another one.  “Are you SURE?”  J giggled, and ate one…and then another.

Everyone was sworn to secrecy.

Dada walked in next.  Long day at work.  Ready for a rest.  Ready for a glass of wine with dinner.  Ready for a brownie.  Yum…and another one.  “These are good?  From scratch?”  Yes, and J helped make them.  A giggle rose from the stairwell, and J came up to greet Dada, and take another brownie.  I cut them small…no fear, people, these were bite-sized brownies.

“What’s so funny?,” Dada asked.  TGG sat on the steps and asked him “good?”  “Yeah, why????”  Dada then proceeded to praise the chocolate-y-ness and fudge-like qualities of the brownies.  J giggled again…

Spinach.  Spinach and carrots.  No milk.  Only egg whites.  Lots of spinach and carrots.  Dada stop mid-bite…”really?”  Yup.  J danced down the stairs, giggling all the way.

Seriously?  Seriously.  The only hint that this might be laden with vegetables is a slight aroma of something very organic when you open the plastic container where we stored them.  “Is that what soylent green smells like?,” TGG asked.  No, I said, taking in the scent; “soylent green is people, right?  This doesn’t smell like people, does it?”  Well, TGG said, maybe the people in this house will smell like that later; have we figured out how much gas these will give us?

I admit pondering this is justifiable.  With vegetables and fruit (some of these previously non-participant in our kitchen) turning up in every single meal, digestive processes have become a topic of conversation.  The most frequent conversation opener is “oh, my GOD!  Did you hear that?????”  Worse yet is when you don’t hear it; if you suddenly feel the urge to run out of the room because some silent passage of gas has taken place, there is no way to be funny about it in situ as self-preservation is an instinct that kicks in (hopefully) immediately.

We survived the brownies, and some of us (I’m not naming names, but the distinct clinking of spoon against bowl as I type this should tell you it’s not me…I don’t type with one hand…) have taken to having these with strawberry ice cream and a glass of milk.  My husband is having spinach and carrots for dessert.  Wonders never cease.

The brownie project was a little pick-me-up for my friend J.  He was still upset about the incident on Monday, and we’d spent the whole morning putting bookcases together, reorganizing the garage, working on shapes and  colors…I figured we’d go into the kitchen and prepare something while I talked to him about how things are never as grim as we think they are.  This morning he requested a band-aid for his forehead before he left for school.

I know he’s trying, and it means the world to me.  I also know his teacher is keeping a close eye on what develops over there.  Today, she told me, J wanted something and when the ST told him he had to wait, he looked at her and motioned as if to ask “should I hit myself?”  The ST simply kept walking, J shrugged his shoulders and the situation was diffused.  Of course, it has to be taken into consideration that J actually LIKES the ST, and that she has had her trial by fire when they first started working together; now she knows what to do when these things happen. If J can hang in there and control his anxiety for the next few weeks, maybe we can come up with a viable solution when his IEP meeting rolls around.  Finding a way to re-assign him to another aide is not viable, but perhaps finding a way to re-direct him to tasks that he can work on more independently is something we can figure out.

We’re down to 21 days to spring, and 24 days to J’s next appointment with the psych.  In spite of this animosity he feels against the aide (because I can’t just put the onus on Tiffany, can I?,) I still believe we can reduce the med another quarter-milligram.  The fact that he asks for band-aids to remind himself that he hits and it hurts, and the fact that he will be redirected by just about any other person he works with tells me we can do this.  Is it going to be easy???  No, probably not, but I was worried about the first reduction, and about overhauling his diet, and so forth…things have been a lot less dramatic than I (who have a penchant for pessimism) had ever imagined.

We keep plugging away at everything that pops up.  We do our best to keep a healthy sense of humor, and we gently jab at each other with love and advice.  Yesterday, for example, TGG sent me a picture of his horoscope with a message that read: I think I’ll follow this advice.  The horoscope said something along the lines of “news you recently received have caused you great concern, but agonizing about it won’t help.”  When I didn’t reply to his message (because, as usual, I was staring at the screen in that sort of disbelief that mothers know all too well,) TGG called and the same voice that announces Kierkegaard’s calls announced his.  “I am legally changing my name to Horoscope,” I said.  Huh?, TGG said, sounding confused.  “You are going to heed your horoscope when it tells you the same exact thing I’ve been telling you ALL MONTH?  I’m changing my name to Horoscope.”  He made a derisory attempt at laughing, and later admitted that, yes, I’ve been sounding like a broken record all month…

“Here…have another brownie with green stuff in it,” I said, “it’s good for you.”  Yes, Horoscope, he said as he climbed the stairs.  I called out to him, quoting my beloved Erma Bombeck: just wait ’til you have children of your own!!!!!  Yes, Horoscope.  I’ll tell them “grandma used to put green stuff in our brownies…and I’ll WINK!  One look at pictures of J walking around with boxing gloves, hats, Slinky…oh, they’ll believe it!

 

Tuesday, Tuesday…

A thin layer of snow has fallen since earlier this morning.  Rather than the heavy blanket we’ve often felt being dropped on us, we are currently like sweet Mallorca rolls, dusted liberally with confectioner’s sugar.  It’s not at all bad; it doesn’t feel like Winter is throwing a tantrum and needs a time-out.  It feels like Winter is reminding us of its presence, but it’s tired, and this is just a cameo appearance.  For a winter-weary population, this feels like a nuisance that we have to humor (Uncle Winter had too much to drink again, and we’re listening to the abridged version of how awesome he was in high school.)

Cause for concern: we met with very little resistance from J when it was announced that he had to stay home today.  The cold is pesky, and he is congested, and complains of a scratchy throat.  He looks tired, but not so much so that one would say he needs to sleep.  Maybe he is just weary from all the confrontation he feels compelled to by this one person who makes him uncomfortable at school.  He knows, of course, that hitting himself is wrong, wrong, wrong, but he also seems to be inclined to think this is the only option for him in that situation.

We are in slippery-slope territory with this matter.  I’ve tried to get around it, and I can’t seem to find a reasonable solution that will help J more than minimally, and -trust me- I KNOW that J is responsible for his own emotional well-being and has to learn to manage himself when he’s put in close proximity to someone who doesn’t rub him the right way.  At the same time, when your kid (ok, your grown-up kid) comes home with an abrasion the size of a silver dollar on his forehead every time they have to work with one particular individual, you have to take a step back and consider the possibilities.

Over time, the skin on J’s forehead has become rather fragile.  If you look carefully at the area of his hairline where he has the habit of hitting himself, there are faded scars, and the skin is thin and shiny.  Doing damage there is not difficult.  J knows this; he is aware that hitting himself is upsetting for everyone around him, but (emotionally) he still feels compelled to do it when he is extremely upset.  There was a time when J would hit himself if he didn’t get his way; this is no longer the case.  J now hits himself when he has reached a point where nothing else he has done has yielded the desired results.  This is how we know that this particular person distresses him more than he can handle.  It is a quandary, and we have to work through it, don’t we?

Yesterday seems to have been a pretty rough day.  J came home distressed, and apologetic about having hit himself.  The note in the book (written by the individual with whom he has issues) shed no light on what had happened.  We later found out that the situation was played down in the note.  When we realized that J wasn’t feeling well it was because we walked into his TV room and found him teary-eyed, wanting a hug, and complaining of a scratchy throat, a cold, dry lips, dry eyes, you name it.  This was more of an emotional malaise than a physical one, and it was upsetting enough to him to sit through a rather long visit to the Urgent Care.

I’m not trying to read into this more than there is, but I have to read what there is…and the first incontrovertible fact is she has been present for all the other major incidents J has experienced this school year.  As Sherlock Holmes says: “eliminate all other factors, and the one which remains must be the truth.”  We’ve eliminated regression, lighting, noise level, petit mal seizures, attention-seeking, skin rashes, a nervous tick, that it’s part of his “routine,” and all that’s left is (let’s call her) Tiffany.  Other students have had, over time, similar issues with Tiffany.  I don’t know Tiffany, but I get the feeling there’s something about her that the kids sense doesn’t quite empathize with them.

Are teachers and aides supposed to empathize with the Special Education population they serve?  Yes, I think empathy is the right feeling as opposed to sympathy.  No person can truly understand how a developmentally-disabled or handicapped individual feels unless they have been in the same exact situation.  I, for example, can try to understand how J feels, but only from the standpoint of someone who observes him closely, has lived with him his whole life, and actually puts effort into comprehending J as an individual, and his Autism as a significant factor in how he behaves, thinks, feels, and so forth.  A classroom setting isn’t the most conducive to this kind of interaction, and I don’t think we should expect any more than is humanly possible when you are trying to empathize with a dozen students with varying degrees of difficulty in different areas.  I know this, and I want to be fair to J and to this person, but the only one I have any influence over is J.

There was a time when people chose fields of endeavor based on vocation, ability, skill.  Now, because there are so many of us populating a vast world with dwindling opportunities to shine according to our inclination, we tend to choose because a certain occupation has opportunities galore, is about to boom, pays well, requires little training.  I come from a family of teachers; my aunt was a much loved History teacher; my grandmother was an extremely efficient Spanish professor; my uncle was amazing at teaching future teachers; my other uncle taught Shop, and I never saw him saw a straight line in his life so I wonder what he was like molding future carpenters.  I tried to be a teacher.  I failed miserably.  I loved the subject I was teaching (English,) but I hated the rest of the undertaking; I had no patience for the whole thing.  It figures that I would find myself trying to teach the most basic skills to one of the least malleable individuals I’ve ever come across, and that patience is the daily bread I must have an endless store of…

Does Tiffany like her job?  Does Tiffany feel overwhelmed by what she has to do?  Does Tiffany even understand what she’s supposed to be doing, and how the mind she’s clashing with day after day after miserable day works?  She’s done this job for a long time, but that doesn’t really answer any of those questions, does it?  Albert Einstein, whose intellect I wouldn’t dare to say I understand one bit, is quoted as saying “Insanity: doing the same thing over and over again and expecting different results.”  I don’t know if this applies to Tiffany, or if it applies to J.  It could even apply to me, or Dada.  Some step in the process is being repeated, and it’s  yielding the same exact result over and over again.  The question remaining is: how do we deal with that particular step without anyone being the worse for wear?

For the time being, I will continue to put band-aids on J’s forehead to remind him of how it hurts when he hits himself.  I will continue to remind him that there are better ways to deal with this kind of stress.  I will count with him the days remaining until the end of the school year, and I will see what can be done to alleviate this situation without ruining someone’s career, or impacting their job security.

I look at very delicate skin, and blood pooling under it, and I wonder how much more damage J can do until it’s too much.  That’s his brain getting jostled, jarred and shaken under there, and we have very thick skulls (literal and figurative,) but there’s a limit to what those thick skulls can do to protect what’s underneath.  I don’t want us to slowly inch back to where J’s ONLY resource was SIB.  I flatly refuse to go back there, but I have to figure out which path will lead us to a healthy and reasonable resolution.

If Vivaldi wrote sublime music to echo the emotions elicited by weather and seasons, maybe all this confectioner’s sugar will help…or, perhaps, a bowl of ice cream would be better?

 

 

 

Happy birthday, Slinky…

Last Saturday marked the one-year anniversary of the toothache felt around the world…  I can’t believe how far we’ve come since then, and how Slinky has managed to travel the whole distance with us.  A whole year.  More than 365 days because, well, Slinky the Current had taken the place of Slinky the Previous shortly before the Big Tooth-Do…(get it?  A play on To Do…  Never mind.  It sounded pretty funny in my head.)

A few days ago I was (almost obsessively) looking for an old picture of Dada that almost exactly matches a picture I found among the thousands of slides I transferred last year.  It’s quite silly, in fact, but I wanted to see them side-by-side.  In the very old picture, Dada is about eight, and sits at the dining table in his parents’ house, sipping juice from a cup with a funny expression on his face.  The picture I was looking for was taken the summer before last, and Dada is sipping a cocktail with the same expression on his face.  The only differences between both pictures are the amount of hair on Dada’s head, the alcohol present in the more recent drink, and that one was taken in California in 1970 while the other was taken in 2012 in West Virginia.  Aside from that…pretty funny.

Anyway…I digress.

While I was looking for THAT picture, I found -of course- hundreds, thousands of others that triggered memories.  Among them?  Slinky the First.  His reign was brief.  I believe he met his demise in a tangle, and had to be quickly replaced with Slinky the Second and so forth until we lost count.  After a while, Slinky the Current was the name we gave all of them until they were no more; they then become Slinky the Previous.  When I tell you that Slinky the Current is the Queen Victoria of Slinkys, you have to believe this.  Never before had we had such a long and stable reign out of one of these helical springs, and he doesn’t look like he’s anywhere near ready to give up his throne.  There are, count ’em, TWO Slinkys stored in a closet for “emergencies,” but J’s loyalty to Slinky the Current is solid.

I will remind you (or inform you, depending on how recently you started reading my stream of consciousness) that when we took J to the dentist that February morning because of his night-long (and long night) toothache, Slinky the Current was still in the first shine of his youth.  Recently removed from the box, he didn’t yet have that dingy dark gray appearance that permeates all Slinkys that have been in contact with sweaty hands for a while.  It was there, at the dentist’s office, that J (in his fear and anxiety) brandished  Slinky as a defensive weapon, and Slinky the Current suffered a noticeable injury to one of his coils.  Slinky the Current, no longer Slinky the Pristine, got slightly bent.

Perhaps it was that they’d been through a lot together that day, but J didn’t want Slinky replaced when we came back from the dentist.  He didn’t want him replaced when we had to go back for surgery TWICE in the span of a month.  Slinky waited for him, like a loyal puppy, while he was under for the whole dental D-Day J experienced last summer.  Slinky the Current has been left behind at home when we’ve gone shopping; Slinky the Current has fallen under furniture; Slinky the Current has gone to school, to the movies, to the doctor.  Slinky the Current is parked on the lid to our chest freezer while J does his Wii exercises.  Slinky the Current is parked on the “Slinky parking blocks” that are in the bathrooms, and on the kitchen counter.  J knows that there are two back-up Slinkys in the hallway closet, but he doesn’t want them…he wants Slinky the Current…

We lived through the affaire du coeur with the boxing gloves.  We know the hats are a fixture.  We are fully accustomed to Raggedy Ann, Minnie Mouse, Daisy Duck, and so forth.  In a household that has seen Slinkys come and go like the Playboy Mansion witnesses the arrival and departure of scantily-clad women, Slinky the Current’s staying power is a sight to behold.  He is a member of the family, as it were…

I know that, eventually, J will maybe outgrow Slinky…the Current, and all the others that will follow.  He outgrew the balloons, the boxing gloves…  Until this happens, I’m just glad that he didn’t let a bad experience and a kink on a helical spring ruin what has become a beautiful relationship.  I’m glad that J overlooked that one flaw (that he caused with his Indiana Jones-like antics,) and that there has been continuity with this Slinky.  I’m glad Slinky sits there while J has his dinner that now includes vegetables.  I’m glad that Slinky was there for the guardianship hearing, the psychiatrist appointments, the times when J has been in trouble and got a time-out.  I feel bad when part of the time-out involves handing Slinky over to me.  I am kind to Slinky…he is the nicest pet J has ever had! He doesn’t overeat and barf on the carpet; he doesn’t need a litter box; he doesn’t require being taken out for a walk.  He sleeps in J’s bed, and doesn’t push the boxing gloves out of the way because he’s humble and knows the more inanimate objects the merrier…

I won’t go so far as to bake a cake, but…if Slinky the Current could eat, I’d ask him what kind of cake and if he wants ice cream on the side.  I won’t try to clean him, or spray him with Lysol.  There is a certain dignity to his dingy appearance, and J loves him just the way he is.  So we will never have the pile of bicycles in the driveway and the tromping of feet on the stairs towards the basement; we will never see a car pull away with J waving distractedly at us.  But we have Slinky the Current, and that seems to work just fine…

 

A funny thing happened on the way to gratitude…

Gratitude is a strange feeling.  We say “thank you” a lot, but we don’t always realize what that means or implies.  J is a big fan of THANK YOU, but it often sounds like what he means is F*CK YOU.  With him it can be such an automatic response that the urge to say “yeah, yeah, whatever” is often there, on the tips of our tongues, waiting to tumble out.

I will confess one thing to you: our gratitude is often arrived at in a crash, or expressed through gritted teeth.  This is not because we don’t have what to be grateful for, but rather because -a lot of the time- we end up being grateful for things we might have been dreading, and things we were unprepared for until they happened.

Take, for instance, the Teeth Issues that dominated the first half of 2013.  We are, surprisingly enough, grateful for those, and we really would not have dreamed this gratitude was at all possible.  We are grateful because of several things: a) J’s teeth have been taken care of, b) J actually learned to communicate better in light of this situation, and c) we realized J is a lot more resilient than we thought.  We are grateful that The Kid Who Was Godzilla has learned (somehow, someway) to manage the anxiety that would have turned Teeth Issues into a catastrophe a mere three years ago.

For some strange reason, we are also grateful for J’s recent meltdowns at school.  I know this sounds weird (wrong even,) but the truth is that we have figured out that it’s not the medication that J is having issues with, but rather some sort of -as yet undefined- dissatisfaction with the environment there.  While we are not grateful that we don’t know what causes this behavior, at least we can be grateful that it is not a constant attitude that seeps into everything he does and that reverts us to where we were when we couldn’t even go shopping without incident.  So, let’s say we’re grateful that this is contained to one location so far, and that we can work on solving the mystery of its provenance as diligently as possible.  Our success hinges on so many factors that it’s not even funny, but…we’re grateful that we are no longer entirely paralyzed by the notion of having to figure things out.

We are grateful that TGG seems to be maturing a little more with each passing year.  I say “a little more” because nowadays kids aren’t fully ready for the adult world until they’re much older.  At the age of 22, TGG still hasn’t fully grasped the complexities of adulthood, and -from time to time- he will do something tremendously bone-headed, but we are grateful that he has moved one more step away from his innate stubbornness and generational arrogance.  It might be that he realizes he’s too old to not take advice, or that we’re too old to put up with childish bullshit from a grown-up, but -inch by inch- we’re moving forward on that territory and, eventually, we’ll be firmly planted in Grown-Up Land…or, rather, TGG will be.

We’re grateful for the Keystone Kops-like quality of our guardianship process.  If that hadn’t exploded in our faces when it did, we wouldn’t have been angry enough to get REALLY proactive about the whole thing.  Until we had to actually take over and bypass the attorney, we didn’t know what the heck we were doing, or how to work through the intricacies of the process.

Annoying and overwhelming though it has been this year, we’re grateful for Dada’s job.  At a time when so many people are trying to make ends meet, we’re doing that, but with the certainty that -for now- there’s a steady income to support us.  In the great scheme of things, we have all we need, and we are not facing any desperate want.  There are so many people out there who have nothing, and need so much…we haven’t taken a vacation in years, but we have a roof over our heads, food on the table, medical and dental insurance, and what more can one really ask for???  Love…and that we have in spades…

We’re grateful, even when we think it’s a backhanded blessing that we’re being given.  Do we deserve all that we get from life?  Not all the time, no.  I admit to you, and this is not an easy thing for me to say, that I don’t deserve nearly half of what I get.  I am, you see, a bad daughter and a bad sister, and being as good a mother and wife as I can be doesn’t fix that.  I am suffering from terminal petty selfishness, and there are things I cannot let go of because I am not as good a person as I’d like to be.  That I am, in turn, being deluged with all these wonderful things makes me feel terribly guilty, and I feel even guiltier when I say to myself that I am thankful for all the good (backhanded or no) that comes my way.

This is the thing: we have a severely disabled  young man we are raising; his future is uncertain because, well, all futures are, and the complexity of disability and such plays heavily in this mix; we don’t  own our own house, and the one we live in is, truly and sincerely, a tremendous luxury that we’ve committed to because -selfishly- we want to be more comfortable, and we want J to have his own space; we have debt that isn’t crushing…if I worked outside of our home, which I don’t do because we’ve decided I should be 100% available for J year-round.  We have a ten year-old car that runs beautifully, but has emotional issues; we have a 22 year-old son who’s learning to be a grown-up and sometimes resents us for expecting more from him than he wants to give; we have aging parents that we don’t see as often as we should; we are aging very quickly, and not as gracefully as we’d like to, but we are trying -very hard- to not fall apart in the process.

Sometimes I look at our life, and I ask myself why are we so happy???  We live paycheck to paycheck, have an 18 year-old who needs supervision when he showers and can’t count farther than 30 (on a really good day,) never go anywhere exciting or do anything fantastic.  Our home is decorated in the style I like to refer to as “genteel decay on a broken shoestring,” and we don’t belong to a cool social set.  We play board games, buy the Sunday Edition of the New York Times once a month, and take a whole month to read it, curl up on the couch to read together, consider a 100-dollar pair of shoes an excessive luxury, have disjointed traditions that don’t fit with those of the rest of the world, own more rugby scrum caps than a whole rugby team would need even though NONE of us play rugby, dread the notion of a car repair or a major medical emergency because either would crush us financially, and can never own a dog…and yet we’re disgustingly, profoundly, sincerely, honestly, wholeheartedly happy…

Through gritted teeth, and directly from the deepest corner of our hearts, we are happy…and if that isn’t enough cause to be grateful, then we can add all the little trimmings that go on the side: our kids are funny, smart, interesting, a little weird; we are madly in love with each other; we cook really well; we have our health, even if it squeaks from time to time…  We are grateful.  Grateful.  Grateful.  Grateful…and today we can say it without gritting our teeth, and with the house smelling of turkey that is slowly roasting, and cats that are snoozing in corners, and J that is walking in and out rooms demanding attention and then immediately rejecting it, and TGG pushing gurneys and waiting for 4 o’clock, and my family diaspora that I can never repair, and Dada’s family that we don’t see often enough, and still we manage to live steeped in love and the craziness of our “normal.”

And for all that we are grateful, no “yeah, yeah, whatever” about it.

Stuck at 29…

Throw the number 3 in front of any other number and J is stuck.  We are now breezing from 1 to 29…reach 30 and a blank look takes over.  I’ve tried working on enunciation, counting, writing, looking at the number for periods of time…nothing…30 is not happening for the time being.

I’m taking the tack that 29 is a big accomplishment nonetheless, so I’m going to be patient with thirty.  If it’s the “th” sound that’s tripping J up, we can find other ways to work on it: Thursday (he likes that one,) three and thirteen (he knows those quite well,) through and thing (those are found in many of his storybooks,) thimble (in his flashcards and my sewing box,) and thank you (which gets over used around here.)  If it’s the number he doesn’t like, I’ll have to find a way to make it worth his while since we can’t really skip every number in the 30 to 39 range simply because J doesn’t want to deal with them.

Today is a no-school day, and we are possibly getting snow tonight.  That might mean a snow-delay in the morning.  I’m preparing for that.  I’ve already made a PECS card for Snow Day, and am working on a 2-hour Delay one.  Last night, knowing that there was no school on his schedule board, J’s parting word as he climbed into bed was COFFEE.  He was as good as his offer…at six a.m. (thankfully not a moment sooner,) he stood in the hallway and announced he was heading to the kitchen to make the magic brew that means the day is starting.

Since there’s no rush today, I didn’t mind that he went to fill his snack box, but didn’t divvy up in serving sizes, and immediately wanted to get his movies and migrate to his TV room.  Eventually, as we took our first sip of coffee, J returned and asked for his box to be arranged so we gave him the green light to do it without any intervention from us.  This was an exercise in compromise on his part: most of the bigger-serving containers have been either left in someone’s break room, someone else’s house or are in use for leftovers, so J had to accept smaller containers and gauge exactly how much he could put into them without getting a cleared throat from across the room.  We never tell him it’s too much, we simply clear our throats and say “are you sure, sir, that the container will snap shut without breaking in the process?”  This morning J showed that he can arrange farfalle into a container in such a way that he only has to take out about ten of them to make it close properly.  This morning he also had to accept that there are only so many ways one can arrange mini-donuts in a container that will hold no more than four…and that that’s all he gets because that’s all that fits.  He didn’t ask for more containers, which is what we worried about when we simply sat and waited while sipping coffee.

For all his discontentment at school, we find that J is quite well-balanced at home.  Last night, for example, he impressed us quite a bit when he asked for Slinky.  Didn’t he just have Slinky in his hand, Dada asked.  I checked his TV room, where we’d been working on some crafts and giggling up a storm.  While working, I could’ve sworn that Slinky was parked on the Slinky Block that we’ve placed on J’s work table.  We moved the bean bag, the pillows, the blankets, searched every nook and cranny, checked the living room, the stairs in case he’d dropped it, his bedroom…all the while J waited patiently at the kitchen counter, holding his Daily Migration Basket with both hands and, from time to time, saying Slinky as if calling out to his friend.  We were baffled.  We couldn’t find Slinky and we had no idea where “he” could have gone to…and then we heard the clinking sound, and J’s happy cooing.  Slinky had spent the last few hours forgotten on the half-bath’s counter.  J had left it there when I sent him to wash his hands so he could help with the gnocchi for last night’s dinner.

And, there you have another little nugget of J-marvelousness: last night’s dinner.  At around 1 PM I asked J to help me season the whole chicken we were roasting last night.  With a great deal of alacrity, J put on his purple disposable gloves, grabbed and handful of the home-made seasoning and proceeded to lather it on the chicken.  He went into every cavity, under the skin, vigorously rubbing the concoction I’d mixed for the bird.  And he did it with such energy and enthusiasm that we had what we now call J’s Broken-Back Roasted Chicken.  The bird was able to lay flat even before I opted for butterflying it on account of its rickety condition.  I heard the snap, and I thought to myself “was that my knee???  Oh, Lord…I need to take my glucosamine!!!”  J held the chicken aloft, it’s spine pointing in three different directions, but thoroughly seasoned nonetheless.  It was tasty, and it cooked to perfection.  J was very proud of his contribution to the meal.

So we’ve been up since early, and we have a list of chores to complete throughout the day.  Later, before it gets colder or starts snowing, we will walk Queequeg to the trash bins and clear the garbage bags from the garage.  We’ll wash some clothes.  We’ll work on 1 through 29…and try to throw 30 in there.  We are going to make home-made tortillas for enchiladas.  We are going to do our yoga and do our run.  We are going to put together the pom-pom foxes we’ve been gluing together for the past few days, and start on a felt sign that has an owl on it.  We have yet to pick a story for this evening, but there’s still time…

It wouldn’t be hard for me to come up with a list of 30 things we can do today, but I’m going to be OK with 20 for a little while longer.  At least J is happy, you know.  At least we are working on something that he can use later…  At least we’re a little farther down the number line than we used to be, so we get 29 TARBET in a row…or 29 NOODLES and 29 SODA in a row…  I can live with that for now…I can wait for thirty.