Ain’t nothin’ but a stim thing…

Thunder.  Lightning.  Not necessarily in that order, but all night long.  It isn’t any wonder that J woke up in a grumpy mood.  I admit to being grumpy too.  The flashes of lightning were close enough to be immediately followed by the rumble of thunder.  Even with the curtains closed we could see the sudden bursts of light…sleep wasn’t impossible, but it wasn’t easy either.

The day is wet and dreary.  The only plus to this is that the world has turned green and lush in short order, and J knows it’s coming up on shorts and sandals season.  The snow boots and jackets have found their spot in the garage next to the Xmas decorations.  The cotton sheets are back in rotation, and we will soon talk J out of putting the red fleece blanket on his bed when he does his Sunday morning sheet swap-out.

We understand that J is trying to make sense of the world through his random acts of, for want of a better term, self-aggression.  He was moody and irascible because the world (in flashes of lightning and rumble of thunder) came in through his closed windows and drawn curtains.  He is touchy because he senses change in the air (maybe it’s all the AAA maps, the Zillow home searches, the piles of things we are discarding or giving away forming in the garage.)

We would love for him to take up painting to express his concerns, but that’s not his way.  J’s way is to flick his chin, hit his head, and apologize profusely.

It will all wind down…eventually.  Right now he is wondering where all this subtle upheaval (yes, there is such a thing…you try to discreetly proceed through the waves of change while whistling and twirling your umbrella in your hand) is leading.  If I am to be honest, we are wondering, too.

In the meantime, we try to make life interesting.  We take our cues from him.  We accept that there will be stones in the road, pebbles in our shoes, and moments of doubt about how to handle them.  J, I think, trusts us.  I like to think he does, and I like to think that he will be as excited (albeit cautiously) about it as we are.

I confess that there are moments when life, people, surprise me.  Or, rather, when the way people see my life surprises me.  A neighbor stopped by today; we share a house-sitter/J sitter.  This is the lady who recommended J’s companion to us.  She is a nice lady.  She is about our age, obviously a little higher up on the socioeconomic slippery slope, and educated.  I like her.  I wouldn’t want to be stranded with her on a deserted island, but I like her.

The purpose of her visit was to drop off her keys so our mutual sitter could pick them up.  She is going away for a couple of weeks to supervise the refurbishing of an oceanfront property that her family owns.  I asked her in (I was still in lounge pants and not at all looking like a lady of any degree of leisure) and she sat to chat for a while.  The chat was, for the most part, about how difficult my life is.

I tried to explain how, in the great scheme of things, this situation sort of sucks sometimes, but it’s not at all bad.  J is a congenial (if prone to asshole-ish-ness) individual who isn’t as much work as one would suspect if one has never had a child with a disability.  The words “sacrifice” and “burden” came up, and I let them slide because the alternative would have been to be holier-than-thou.  I said that, when you boil it down to its essence, J is just a demanding roommate.

Dada was in “I’m hiding in the sitting room” mode.  A) He was in his pajamas, B) he didn’t feel like socializing because he was playing some computer game (per his version he was looking at job boards,) and C) he would have been drawn into this conversation and he would have, as often happens, said something he’d later regret.  (See, please, my reference to the time we visited a couple of our acquaintance -foodies of the highest order- and they were talking about “that guy from Dallas” in reference to a chef, and Dada chimed in with “Oh!  Larry Hagman????”)

He heard the exchange over the baby monitor.  When we were once more alone and I returned to the living room, he looked up at me and said “wow…burden!!!  I could hear your teeth gnashing through the floorboards.  I could also hear your face cracking from the “I’m a civilized human being” smile you had painted on your face.”  I shrugged and said “if it makes her feel better, who am I to explain that this is annoying, irritating, overwhelming, and absurd, but not really as much of a burden as refurbishing a coastal property???”

He laughed.  He gets it.  He knows that I have gone past the point of responding to that sort of condescension.  Like J’s flicking his chin or hitting his head, I know it serves some sort of purpose for the person saying the stupid thing.  It annoys me, and I wish it would stop, but I give it time to fizzle out.  J knows this, and he looks at me and slows down the behavior that is “off” and then it’s gone.  He apologizes.  That is because J understands that we cannot communicate properly if he is doing something that is counterproductive to the process.  When he has no control over his actions (that is: during a meltdown,) I have to accept that he needs help; when he is throwing a tantrum or being an asshole, I have to let it go.

This lady, in a nutshell, was being the most well-intentioned kind of asshole there is; she wanted me to know that she felt my life was framed in very unfair terms, and that she felt for me.  To correct her would have been unfair of me; she doesn’t -aside from the superficial sharing of a sitter- really know me.  She is not a bad person; she is just not working with all the data that she needs to properly assess our situation.

People sometimes talk for the same reason that J randomly hits himself.  It stimulates them; it gives them the impression that they are empathizing, that they can interact in a way that we will value.

It’s just another stim thing…annoying, unnecessary to the casual observer, but present nonetheless.

 

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An update on the whole kerfuffle…

On a busy Friday evening, while making lamb meatballs and rice pilaf, I dialed the Social Security 800 number.  I waited for about 40 minutes before getting   human interaction, but it was well worth it.

The letter they sent is a mystery to them.  The person I spoke to was as baffled as I was, and their supervisor was baffled, too.  They have sent a request to the local office for an explanation and, hopefully, I will receive a phone call from the person who issued the letter within 10 business days.  If they don’t call me, I am to go to the office and ask for an explanation.

The response I got echoed my own reaction: 1) why now?, 2) why at all, 3) the record is as clear as a bell, and there is no question.  The best guess is that there was a clerical error when they did their most recent call with us.  If it’s a clerical error, why wasn’t it properly audited?

So, we go to bed a little calmer.  I won’t force J to leave the house to appear at a district office on Monday.  He is disrupted enough by the letter, the phone calls, the stress as it is right now.

The phone rep, an articulate, helpful, efficient young man who understood why we were asking all the questions we were asking, told me to sit tight and wait.  I will respect his request.  I will also, once the 9 days are up, put on my dress, my hells, pack my binders, and -like my aunt use to do- march my fanny down to the SSA office to get this thing squared away.

The misconception that people who cannot verify their citizenship get away with collecting benefits is sad.  When you apply for benefits, your ass becomes a high-traffic tunnel through which many (with spelunking helmets, high-powered lanterns, and all sorts of equipment) crawl freely.  If you manage to slide through a crack and don’t immediately get caught, trust me, they will catch you.

Like I told Dada over a bowl of fixings for lamb meatballs: would Jon Neiderlander or Tiffany McAllister get questioned?  Probably not.  If a supervisor was acting based on a report generated by an underling who was not yet fully independently functional in using a database, that’s what auditing is for.  You double-check, and double-check again before you issue a letter questioning a person’s information giving conflicting names.  When I worked for the federal government (back when I was young, green and untried) I would get called to the mat if I made a mistake.  And we didn’t have the sophisticated software that is currently in place.

If there is one thing I learned early on about customer service it isn’t that the customer is always right, but rather that the customer can be made to see where they are wrong if one uses the proper courtesy and dignity when dealing with a situation.  When a person providing a service acts as if the service is being provided to an inferior being, the battle is already half lost.  When a person doesn’t understand the nature of the information on which their service is based, the rest of the battle goes down the pipes.

A simple audit of J’s actual file would have clarified the whole thing.  Yes, a lot of people receive benefits, but you consider that there are 600 Hispanics in this town, and that it’s very likely a very small portion of them receive SSI benefits, it stands to reason that looking at the file isn’t such a stretch of resources.  If you consider that the letter can be worded as a requisition of verification rather than summons to prove that you are not committing fraud…well…

That’s where things stand.   Lamb meatballs, pilaf, a nice Rioja, Bull Durham and a pint of ice cream later we are ready to face the weekend.   Kindness to The Other doesn’t have to mean ass-kissing…it can mean something as simple as doing the job right.

I get it if you don’t get it, but bear with me…

We received a letter from Social Security today.  It was addressed to me, and to J.  In it we are told to come to the Social Security office no later than the fifteenth of May to speak to a specific employee because J’s citizenship (his name stated incomplete) has not been proven.

I propel us to the house, and I grab the phone.  The certain employee who has issued this letter isn’t available, but another employee will help me.

J’s Social Security number, J’s name, his birthdate, my name, my birthdate, my mother’s name, her birthdate, our address…all these questions are asked, and I answer them and, to top them off, I add the previous two addresses, our birthplaces…  Yes, yes…I throw in my Social Security number…

Hold for a moment.

Ah, the letter is wrong.  We just need to prove J’s identity.

WHY????

Well, there’s an error in his file.

Since when?

Recently.  You have to bring him in with his ID.

WHY????

Because we need to prove that he is who he is.

You realize that IDs can be acquired fraudulently.

Ye-ees.  Then we can use a document from a medical services provider that states his identity has been confirmed.

WHY????

Um…it’s just something we have to do.  If you don’t want to come in, you can mail us his ID and we will return it to you.

NO!!!!!!!!  We will be there Monday morning.

What I didn’t tell him is that I will be there Monday morning with a cart full of binders proving J is who he is; birth certificates (the original and a recent official copy,) his original Social Security card, his school records, his medical records, his Ident-A-Kid cards from when he was a mere tyke, our tax returns, everything!

The guy, of course, treated me like I was hyperbolizing but, and this I told him, considering the current social and political climate, can I be blamed for that?

Say J’s legal name is Javier Rolando Gómez-Torres (it isn’t, by the way,) and the letter is addressed to him and to me, his mother.  In the body of the letter it reads “we have not been able to confirm citizenship for Javier Torres.”  Why send the letter to Javier Rolando Gómez-Torres (with his correct Social Security number, which is issued in that full name) if you want to know about Javier Torres?  If you don’t understand patronymics as applied in Hispanic countries, territories, cultures, etc., I will briefly explain: Javier and Rolando are first and middle name, of course; Gómez is the father’s last name and Torres is the mother’s maiden name.  If you don’t use a hyphen here in the states, the name becomes Javier Rolando Torres Gómez, or Javier R Gómez.  The mother’s maiden name disappears.  Back home, and all over Latin America, we keep both.  So when I read Javier Torres, that is not the same person the letter is addressed to, and it gives the impression that the agency is implying J’s name is not what it is, that we are saying he is someone he is not.

J is NOT Javier Torres…not even not literally; J uses both first and middle names, his father’s last name, and my maiden name.  We hyphenated them because we want to make sure that both are in there.  When I married Dada I hyphenated my name, too…so my kids would be easily identified as part of this same family unit.  So…I am (again, not really) Margarita Isabel Torres-Sandoval, married to Diego A Sandoval,  and my kids use Gómez-Torres connecting us all in one rather confusing mishmash.

There isn’t, nor has there ever been, in this household a Javier Torres using J’s Social Security number, and that this question is being raised NOW is not a particularly pleasant feeling.

“Why must you make this about politics????”

Well, that’s a tricky question.  It is about politics because none of this had been questioned before people started fearing The Other as openly as they do now.  When we first arrived in this town, in 2011, people were congenial, helpful, kind, charming.  Over the past year, without becoming openly hostile, some of that has been lost.  In general, the country has seen a shift to mistrust of The Other, and -sadly I must admit- it goes both ways.  We, The Other, have started to wonder if all this delving is “normal.”

A few months ago I handed my ticket over at the dry cleaners, and all was chit-chat and charm until I got my items back, handed over my credit card, and there was my very undeniably Hispanic last name.  The lady, bless her soul, clammed up and didn’t really talk congenially anymore.  The cashier at the store who asked what a plantain was, and said, after I explained, “ah, foreigner food” didn’t help matters.  Hearing people say things about how “their” country is being taken over by outsiders, and they want to “take it back” is kinda scary.

Whether this is in response to a primal fear of being overrun by The Other, or whether it’s because The Other might have his/her hackles raised in defensive awareness is anyone’s guess.

The truth is that I had never, in spite of several experiences as a small child learning English during trips to visit my grandmother in Florida, thought of myself as The Other.  I thought, and I am starting to sense that it was pretty naive of me, that I was just who I am.  I served in the Armed Forces.  I speak the language fluently; I also read it, think in it, pray, do math, argue…I earned a M.A. in this second language of mine while never forgetting my own.  I have a trace of an accent, but it’s not so much so that you’d not understand me when we have a conversation.  I have lived on both sides of the continent.  I am an American who also happens to be a Puerto Rican.  It used to work just fine.

Seeing that letter shook me.  Hearing that I have to physically produce J and his ID, and that I cannot -even as his legal guardian- prove who he is…he has to do it himself…either writing his name, or making his mark…it jarred me.  If his name was John Smith, would this be happening?  I am left to wonder if it is the fact that J lived in Puerto Rico, then North Carolina, then California and then New Mexico before coming here…there’s two “heavy on the immigrants” states in that list.  Maybe we’ve snuck him in and passed him off as this Javier Torres person?

I don’t know.

I am trying to reconcile this knot in my stomach with my knowledge that we are honest, upright, loyal citizens.  I am wondering if someone, out of spite, decided to say “hey, those people…,” just to see us squirm.  Or because they can.

I don’t know.  I don’t know.  I am worried.  I shouldn’t be, but I can’t help it…

Because the world is turned upside down, and people have lost track of things that used to be reasonable.

Sigh…

We go for a walk…I paraphrase Michael Corleone…

To start,  please, imagine a long string of expletives muttered under my breath as I stomp back home leading a screeching J, and maneuvering a rather large, heavy, and full wheeled trash can.

…..

OK, so here goes the Michael Corleone paraphrasing: Just when I thought we could go out again, I have to pull him back again.

There we were, two happy pedestrians taking the trash on a for-now sunny day, and out of nowhere came the famous “he’s on a shock collar” German Shepherd.  The loud, sharp squeal and the sudden tensing of muscles (even though the dog was about 100 yards away) made me turn, mutter and paraphrase with enough alacrity to belie my chronic joint pain and difficulty in moving.

The change in direction and acceleration had to be achieved while checking for vehicles (those two STOP signs and one speed limit are doing nothing to help matters with the shitty driving around here,) and guiding J towards our garage while soothing his nerves.

We waited a few minutes.  I took this time to text the landlord and tell him what was going on.  He responded to me with the same concern and interest that he responded to all you lovely readers when you texted him on the same subject.  (HUH?  I didn’t text your landlord, crazy middle-aged mother of J who is on The Spectrum…oh…wait…I SEE!!!!  Ha ha ha…I get it…he didn’t reply because we didn’t text him…get it, get it…go on with your soapbox performance for today.)

J had been happy.  Seriously happy!  He was wearing his new Panama hat, the sun was shining, the breeze was warm and lovely.  Suddenly we were back in the garage and he kept shuffling his feet, looking anxiously at the street where the dog had been.

We ventured out once more.  In J’s hand was our gas bill, crumpled.  He ironed it out hurriedly on top of the trash can lid so I wouldn’t be upset.  I told him that didn’t matter.  We just checked for the stamp, that it hadn’t been torn, and I returned it to him so he could put in the mailbox.

We looked around, saw no dogs, and back we went.  Of course, by this point J is just super vigilant.  Any bark from a distance, garage door opening, sudden step makes him look over his shoulder.  We deposit the trash in the dumpster, look before crossing and head to the mail room.

As we go along I remind J that I have his back.  I will do whatever it takes to help him if he’s anxious.  I will wait, or I will walk faster.  I will take out our dreaded iPhone and (with my too-big fingers and thumbs) shoot off an angry text at the parties in charge of the rules being followed.  I will stand between him and dogs, cars, wild horses…you name it.

I feel his arm and shoulder begin to relax, and we stop at the corner to check for traffic.  “Look left.  No cars.  Look right…” His shoulder and arm tense and he grips me…there is not ONE dog…there are now TWO.  What are these people doing?  Lying in wait?  Did the first guy call and say to his buddy “hey, the freaks are out…bring your German Shepherd out, too?”  I take a deep breath, tell J to walk and not look.

He walks.  He tries not to look.  He fails miserably.  We speed up and make it back to our garage (with J frantically hitting the remote’s button so that it starts to open, closes, starts to open again, and I ask him to take a deep breath and relax because we’re on the concrete of our driveway, and that’s a sanctuary.)

J’s heart is racing.  He looks at me as the garage door closes and we finally find ourselves separated from the world of dogs.  I tell him it’s time for Wii, and he nods.  He takes off his Panama hat, and hangs it in the hallway.  He gets his step stool, and he turns on all the necessary equipment while I change my shoes.

By the time The Monkees are halfway through I’m a Believer, J has relaxed.  He smiles at me, says HAPPY, and then I LOVE YOU.  I smile, say HAPPY and I LOVE YOU, TOO.  I add “I have your back, buddy…I will protect you.”  He lets go of the step stool and, still running, hugs me.  We are actually running while hugging, and this makes us both laugh…

It is, in the great scheme of things, a rather fantastic moment.  J laughs heartily as I lip-sync to Huey Lewis and The NewsDo You Believe in Love? (I’m always The News…doing all the eeehoooohs and such…)

As we make lunch I ponder what people think this is like for him.  I know the property manager told me (with much fanfare) that she used to volunteer with kids who have Autism.  I also know that she, too, has let her dog rove around leash-less.  I know she addresses people not picking up after their dogs, but I also know she never tells them that the lease states dogs have to be on leashes. I know, heaven help me, that I come across as an annoying whiner who thinks her kid’s rights override the rights of the other tenants.  I can hear her saying “the lady in unit such-and-such complained that…”  If the issue had been addressed as “the terms of your lease state that…” this wouldn’t be such an issue; because it is “the lady that lives in unit such-and-such” it becomes sour grapes from a hag who gets disability checks for her son.

I decide to let it go.  Well, not really.  I decide that I have documented it, and I will use this when it’s time to break our lease to move away.  Not in a combative manner, but in a “hey, there’s this that I have expressed concerns about, and hasn’t been addressed” manner.

The moment that was bad is gone.  The moment that sucked is over.

It doesn’t mean it wasn’t bad for J, or that it won’t suck when it happens again.

 

Every picture tells a story…

Lately J has been coming up to us with his mini-album of our trip to D.C., and requesting that we name who (or what) is in each picture.  Mostly, of course, these are pictures of him with us.  He doesn’t want to hear that WE were there, but he loves to hear that he was.  He hands it over, stands close by, and we begin: J, J, J, J, Lafayette, Rochambeau, J, J, J…Washington Monument, J, J, J, J, FDR Memorial, fountain…FDR…Fala…Jefferson Memorial, J, J, J, and so on and so forth.   There are two pictures J took of Dada, several that we took of the three of us, several of J with me, and one of us parents together.  He doesn’t mind hearing we were there, but he wants to focus on the fact that HE was.

We wonder if it’s his way of saying he’s ready for us to take to the road.  Or, because sometimes he whips the album out when we’re having a tiff with him, he wants to remind us that we can have fun together.

We know fun is possible, just like we know that sometimes it’s the farthest thing from the list of things we can easily accomplish.  We don’t want J to think that just because things are rough at any given moment we forget that he is, in fact, quite a charming and fun companion for us.

We think he senses the change in the air, and is starting to stress over it.  We are working on helping him understand that this is a good thing, and that we are all in it together.  That may be easier said than done, but we won’t stop trying.

By Monday we will have the Gigantic Countdown Calendar of Changes posted on the kitchen wall.  We will make note of every little thing that might throw J off, from long weekends to trips to scout neighborhoods to Dada’s last day of work to the slow process of dismantling our local life.  Knowing J as we do we are aware that there will be a lot of going back and forth, analyzing the calendar, pointing repeatedly at items that “alarm” him, and repeating that it’s going to be just fine.

We can’t know that.  No one can offer any certainty, but we can try to offer some sort of soothing consistency to the texture of J’s life.  Anyone can feel stressed out about changes in day-to-day life, and even more so when it comes to major changes in the way we live.  We can easily (more or less) get away with swapping J’s Five Guys day from Saturday to Wednesday, but we know that THIS is not THAT.  Getting him across a long distance and into a new home, which he will help us find, is not as easy as saying “guess what!  We’re not doing our outing today…we’re doing it in a few days.”

This change involves maps, packing, a truck, and leaving behind a family member that had figured in every across-state-lines move up until now.  That J is not particularly inclined to interact with TGG is beside the point.  This is, more than TGG moving out, a “leaving” and “moving on” for J.

It will certainly be a change for everyone.  For the very first time we will be living in different states, and TGG’s life -which has become very much his own- will be even further removed from ours.  The prospect is in equal parts sad and exciting.  We already operate on different orbits, and we know TGG pulls more to his girlfriend’s family’s side than to ours.  We also know that she has very little interest in us, and that she is probably angry because I told TGG that I expect the children to behave properly when they come over.  I don’t think that went over well, but I really don’t think a four year-old calling me names and being rude is something that I should give a pass.  It’s not like I expect the children to not be children; I just expect them to not be rude.  And that, it seems, is an issue for her.

Will the realization that we’re leaving make J soften his stance around TGG?  I don’t know.  I don’t expect J to behave as I would like him to because feelings are a realm where I cannot interfere.  I can tell him that he’ll miss his brother, but he already doesn’t.  I can tell him that he’ll come visit, but that -J knows- is either a lie, or involves the presence in our home of five people that don’t belong there, and that will cause him anxiety.  My only option is to keep pictures of TGG, his girl, the kids and let J see them on walls and tables, reminders of “there’s more to us than just US.”

Life is strange, and we accept it as it comes.  We will adjust, once more, to adjusting.  We will figure this out.  We might need a bigger, more convoluted Gigantic Countdown Calendar of Changes, and it might take us longer to persuade J to go along for the ride ahead.  It has taken us long to convince each other and ourselves, and still we often look around and say “are we doing the right thing???”  But we know, deep inside, that this is right, and that it’s going to be difficult and challenging and exciting and a total mess.

I don’t know if you’ve seen this lovely story: http://www.huffingtonpost.com/entry/blockbuster-home-son-autism_us_58ff9cf0e4b0073d3e79fb23

When people ask “why would anyone do THAT?” I can’t help but say “because it makes the kid happy, okay?  And it helps the parents feel that they’re doing something right…and that is always a good thing when you’re in this situation.”  So, we are not giving J a Blockbuster, but we’re finding him a home where he can have his backyard, his peace, his village and train set, his twinkling lights and paper butterflies, his center of the universe…

And maybe he will make us look through the mini-album of this adventure over and over.  Maybe this, too, will become a happy memory that helps him deflect anxiety, or reminds him that the world is bigger than the four walls that now surround us.  Maybe this will mean a grand adventure…

A little up and a little down never killed anyone…

Our visit to the psych on Friday featured praise for J’s progress, suggestions regarding keeping him on the med for a whole year, and the possibility of on putting him on Metformin.  We don’t go back until July.

And then J decided to pepper our weekend with random moments of being obstreperous.  Such is life.

Dada had taken Monday and Tuesday off from work, and this caused J anxiety.  We went out of our way to clarify beyond any doubt that this was a “fun” time, and -regardless of how “un-fun” The Smurf movie was, we did our best to make sure J enjoyed those four days of Dada being home.

Well…

Menopause (or its vicinity) and Autism are not a good combo.  Sunday was Easter…Sunday was horrible.  I don’t know how Dada survived two extremely crabby human beings under one roof, but he survived.  J and I were both exhausted by the time we went to bed.

We managed in the end.  We had to reinforce the “fun” elements over and over, and remind J of the altered schedule, but we managed.

At one point during the weekend there was an epiphany, and our life is turned upside down (in a good way) because of it.  We actually, in hindsight, blame it on This Is Us.  If you haven’t watched this show, or if you do and are -like we were- savoring each episode and not bingeing (like one wants to do with the conclusion of each episode,) I won’t spoil it for you.  If you have watched the show, I’ll just blame it on William…you know what I mean.

Anyway…on Saturday morning, while we were getting dressed to take J to the inevitable Smurf movie, Dada just looked up and said he was done with his job, and -if it was ok with me- he was putting in his notice.

The only difficult part of saying “yes, a thousand times yes” was that I wasn’t fully dressed (I was trying to put on a skirt that I can never quite find the button on the waistband, and I had one foot up on the bed because I was (and this is dangerous at any age, but more so at ours) trying to put an espadrille on at the same time…

Once I regained my balance, I hopped on the bed (yet another precarious arrangement) and said a rather enthusiastic yes.  If I tell you that my husband suddenly looked a lot younger, a lot less stressed, and massive relieved you have to take my word for it…we are not “let me capture this moment for Instagram” people.

No, that didn’t really contribute to J’s anxiety…at least not completely.  I think he was more thrown off by the usual “you’re taking me to the doctor, right?  He’s only here when I’m going to the doctor…so that has to be it…come on, guys, I feel FINE!!!!  YOU!  The man with the goatee and the Subaru…go away…go to work…I don’t need to go anywhere where they will poke me, jab me, make me say AAAAH.”

This was, in part, a factor in Dada realizing just how immersed in work and work-related worries he has been.  J only associates Dada being here with going to the doctor, going shopping, or a weekend (which usually means shopping or errands.)  Dada used to be a person who took him for walks, who watched movies with him…Dada has become the person with the work ID around his neck, and being here on a weekday means “doctor.”

I know this is an extreme interpretation on J’s part.  I know Dada does more than that, but J has processed it that way, and it has had an effect.  We worked, quite assiduously, at reframing that image these past few days.  By the time J woke up yesterday, found Dada was not here, and started his regular routine, there was a different vibe.  We did our usual stuff, but Dada was missed…

On Tuesday I told Dada to take over Wednesday’s Lego…he and J sat down while I cooked dinner, and put it together. A day early (routine flies out window…film at eleven) and in a different room in the house (dining room,) but J was happy and relaxed, and he enjoyed the presence of the person he had come to identify as the family “ambulance.”

If J realized that Dada isn’t just here to hop in the car with us and take a vacation (always too brief, and always hectic,) or to take us to an appointment, or meet us at a doctor’s office, or simply to go to Target, Five Guys, Barnes and Noble, Kroger, Michael’s…Dada realized that he has spent way too much time working when he could have been here.

Mind you: the man will get a job, and he will have responsibilities and obligations, and a steady income…but…

Our plans to scale back, reframe, rethink, reassess are in full swing.  We are not disappointed by the lessons learned.  Yes, it is easy to take for granted certain things…that is clear.  Yes, work is important and necessary…but family comes first.  Always first.

We are doing our inventory, setting wheels in motion, creating a timeframe, organizing our materials, and setting this project in motion.  And it feels good.  My husband’s early morning sneezing attacks that would happen only on workdays, and which I would joke were an allergic reaction to his stressful work situation have, surprise surprise, ceased…he hasn’t sneezed once while getting ready to go to work in the morning.  Maybe they’ll start up again tomorrow…maybe…maybe they were just his way of letting out that he wasn’t happy with his job.

We face a new adventure.  We are, actually, quite thrilled and freaked out, and excited and hyper about this…  Our eight year-old selves are building a raft, stealing a sheet to make a sail, and gathering provisions…  Our fifty-something year-old selves are letting them take over while we do the grown-up stuff.

This is all bound to be chaotic, hectic, complicated, scary, exhilarating.

And away we go…

The ear is better, the mood is great…

My stubborn son is feeling much better.  He is happy.  He is taking his antibiotic and enjoying life…  I can’t ask for more, really.

Well, I can.  I can ask all I want, but I’m fine with not getting what I ask for…unless it’s continued health and good balance in our home.  That’s all one wants.

Yesterday was Lego Wednesday, and we completed yet another building for our village.  Dada is talking discretionary deforestation and train track rerouting.  Given the fact that we both have a bird’s eye view of how crammed things are in that smallish space the village occupies, I tend to agree.  That will be this weekend’s rainy day project.

J has been more spontaneously verbal of late.  Not only does he chime in with a THANK YOU without anyone giving him a pointed look after he gets something he wants (be it help, food, a movie, or anything else,) we now get regular I LOVE YOUs when we least expect them.  The first time we were thrown off trying to figure out what he was saying; his enunciation is not the best, of course, and he wasn’t signing when he did it.  We hear PEW-OVE-EW…and scratch our head for five minutes while trying to figure out what he’s asking for before J comes up, hugs us and says PEW-OVE-EW and a lightbulb goes off…I LOVE YOU.  HORRY, obviously, is SORRY.  TEK-EEYORE-BAFF is TAKE YOUR BATH.  What he doesn’t achieve with enunciation he makes up for with volume and intensity.  It’s a little like being in the path of Sam Kinison’s delivery of any line ever…but it’s spontaneous, and it is awesome.

I have good things to tell the doctor tomorrow, but I also have concerns.  The whole thing with not wanting TGG around worries me.  Will J ever want his brother back?  Is it something J needs to fix, or is it something TGG needs to work on?  We make sure that we mention TGG in a positive way, and we do our best to show J how present he is in our everyday lives, but…  J’s just not into it right now, and it feels wrong to force his hand.  We might have to?  Maybe?

I have list of questions.  I will try to address al of them without coming across as a weirdo.  It’s very easy to feel like one is being over-punctilious when trying to find out if the way things are being approached is the best.  As parents of a disabled individual we often need to hear that we’re not screwing up massively, or that we are not as hysterical and silly was we sometimes think.  This makes us come across as more hysterical and sillier than we would like.

We have resumed our walks to the mailbox.  We have to strategize so we don’t run into canines that J might find intimidating, but J is also working very hard at not immediately freaking out when he sees a dog in the distance.  Some days are better than others, but we can’t ask for more than that.  Well, yes, we can ask for the opportunity to someday have a dog of our own, but we’re not pushing that either.  (We just KNOW that J would get along with a kindly, sweet, soothing Golden Retriever named Mott the Hoople if given the chance…but that’s probably just our imagination.)

J had missed wearing his beaten up Panama hat, and he dons it with panache when we’re heading out the door for our walk.  He’s not ready for shorts (I’ve bought new ones to accommodate his newer waistline…hopefully we don’t need to go up another size, but we’re ready if it happens,) or sandals, but he has worn his lighter shoes to go out these past few days.  I am very glad of this as I’ve been stepped on with the snow boots more times than I care to admit over the course of our winter outings.

Our plans to move are reviewed and revised frequently.  We want to make sure that our prospects are positive, and our expectations are not so high that we fall flat on our faces. The focus of our plans is, of course, what is best for J, so we continue to review and revise, and fine tune, and consult…with each other, with the bank, with the job boards, with the universe.  We find, as we move along this process, that our requirements are more modest than we originally estimated.  It is a rather nice feeling.  Daunting still, but nice.

And now, off I go to use some time J allows me while he is on his elliptical (it’s still The Sound of Music) so that I can get some reading done…I think I’m good for thirty-odd pages and a cup of tea.