The way we live now…inside and outside of the shell

This is Dada’s last week at his job here in WV, and J is trying to adjust to the new face of our everyday routine.  We worked on that this past Monday (Memorial Day) when Dada was at home.  Instead of treating it like a holiday, we inserted some of J’s regular Monday routine into the mix as well as some fun activities he doesn’t expect to be doing on a weekday.

It sort of worked.  I’m sure that next week will be “interesting” because it’s one thing to pull off a “Dada’s here from work” one day, and it’s harder when it’s a few days in a row without a trip planned.

I have grown used to the horse pills I have to take every night.  I don’t enjoy them, but they have yet to upset my stomach so I’m grateful for that.  Taking that much iron in one fell swoop is something I’d never had to do before, and I’m slowly starting to feel better, but the prospect of attracting the refrigerator magnets is daunting.  It’s nice to not look like death warmed over, but it’s also a revelation to see that not all my physical limitations are the result of galloping anemia.  I am, and this cannot be denied or reversed, definitely getting older, and it shows.  I am, however, also looking forward to having more energy (something the doctor tells me I will work up to as my body restores its iron reserves to a decent level).

J is doing well.  The Risperdal, of course, wreaks havoc on his weight, but that doesn’t stop him from exercising and trying to control the urge to eat us out of house and home.  In recent weeks we have accepted that we need to exchange certain menu items…pasta and pizza on the same day are a no-no, and J now put his pizza on the schedule, put away his pasta (he gets fourteen noodles for a lunch, people, it’s not like he gets an immense amount anyway) and has his yogurt and banana chips for breakfast.  I make him a salad…he eats it with what can be described as resignation, but he eats it.  Today (Pizza Day) is also Fish Day…  Very little impact on his waistline so far, but at least he’s learned to accept that he can’t have it all on the same day.

Now that the weather has improved (although we get rain most days) he is also going for walks.  Once Dada is home until his next job happens we have planned an after-breakfast walk, our mid-morning workout, trips to the pool, and -when weather allows- walks on the track at school.  Lunch will be the biggest meal of the day.  We will do more outside, and we will all get ready for the next stage of our life as a family.

We still don’t know for sure where we’re hanging our hats.  It looked like Atlanta, GA for a while, but the employment market there is extremely tricky.  Lots of jobs, but not a lot of feedback from potential employers.  The state of North Carolina, on the other hand, has surprised us…immediate replies to applications, unexpected calls regarding jobs we didn’t know were out there.  We are actually quite enthused about this prospect; Raleigh is where I lived with the kids (in my sister’s home) after I separated from the children’s father, and that is where Dada came to visit and proposed to me…eighteen years ago.  We’d be coming full circle, and it’s an area that we both find appealing.

With just a few days left for Dada at work, and the prospect of an out-of-state move within the next few weeks we are all getting a little antsy.  I look at the house and see things to pack, throw away, donate.  Dada looks at the house and sees a messy process.  J probably thinks “all my stuff is coming with us, right?”  He has realized that there is a great deal of change in the near future, and it has made his anxiety ebb and flow erratically, but we are working with him to help him cope.

One thing that has thrown him off completely…unexpected, unannounced visitors over the past weekend.  On Friday, as I opened the garage door to air out the space before J got on his elliptical, a truck pulled up and former aides from his school showed up for an impromptu visit.  To be honest, it took me a moment to recognize them…they were so out of context that I had to take a second look.  As they cleaned the classroom (one year later) J’s ceramics assignments and some CDs he had left behind turned up.  Of course, I had to tell J they were here…I couldn’t not let them say hi…it would have probably seemed suspicious to them…  J was thrown by the visitors, and he wanted them (although not in an aggressive or insistent manner) to leave.  I think he worried briefly that he would have to resume his old schedule, and -while it has taken him time and effort to become a man of leisure) to leave.

After they went he was relieved, but he kept going to the door to make sure no one else was showing up.

On Sunday, just as we were getting the last details of dinner ready to go, the doorbell rang.  This time it was a visitor for Dada.  We had run into this person the day before at the bookstore, and he was recognizable to J, but he was also inexplicably here…close to dinnertime.  J was, I must confess, very good about the whole thing.  His main thing was to go back to his schedule board and reiterate that the events, tasks, activities and ideas he had for Monday remained unchanged.  He did this about sixty times…in fifteen minutes.

We eventually found our center.  We eventually sat down to dinner.  And Monday happened in a pleasant way…

We’re getting the hang of it…again.  Another hang of another it…

…and when you hit rock-bottom there’s more under that…

Ah, anemia.  No, sorry…Anemia.  It needs to be capitalized.  It is, sad to say, taking over everything.  I cannot even walk around the store without looking like I’ve barely survived Lawrence of Arabia’s desert march to Aqaba…

It seems that there’s a normal level for ladies of my age.  It seems I’m not only nowhere near that level, but I’ve drastically fallen short of any reasonable expectations.  I’ve even fallen short of unreasonable ones.  I am, in a nutshell, so anemic it hurts…

Here I go again with Lawrence of Arabia:  “The trick, William Potter, is not minding that it hurts.”  I mind.  I can tell that it’s causing grief to Dada and J, and I mind terribly.

I am in earnest about feeling better.  Going to the doctor twice in one month isn’t my idea of fun, but the second go-round helped greatly.  It didn’t help the anemia per se, but it helped with helping.  Does that make sense?

So unlike Nigel Tufnel, I don’t go eleven across the board…nowhere near, but I’m working on it.

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J has been concerned.  Seeing me walk up the steps (18 of them from basement to kitchen level) and realizing I am out of breath and ready to collapse isn’t something he could easily ignore.  I am also pale, and the bags under my eyes have taken on a really dark hue.

J is helping a lot, people.  He offers me his arm when we go for walks (which, granted, hasn’t been happening as often,) and he sits with me when I need to sit down.  When I show signs of being a little more energetic than I have been of late, J gets very affectionate, wants to cuddle, and requests fish kisses.  He is being very patient with his falling-apart mother.

Whenever someone tells me that a person in the Spectrum (as firmly planted on the severe end as J is) feels no empathy, I call bullshit.  This kid has been worried, and empathetic, and helpful.  This kid cares.  This kid, when he saw me improve thanks to the doctor’s intervention, looked RELIEVED.  So one bad thing opens the door to many realizations…J is very present in his own way.  And I am grateful that he is, and so is Dada.

In the meantime, I am trying to be patient with myself.  I don’t know how I got this bad, but there you have it.  I am working on it, though.  I won’t go so far as to eat liver (blech…double blech…super double blech…ultra blech), but I’m working on getting better.

And that’s all there is for now…

 

When life hands you lemons, skip the lemonade…

I need limoncello.  If you’ve never had limoncello, google it.  OK, that’s tantamount to saying I need alcohol…which I don’t.  I just need to do something with these darned lemons…

Sigh…

The trek to the Social Security office served one purpose, and here comes another letter: you’ve been overpaid.  You can appeal, or ask for a waiver.  Otherwise we’re going to take the money out of your next few checks.  That’s because you live with your parents, and they live too nicely.  If you’re going to be receiving benefits, have the good sense to live like you need them…or have your parents live like you need them.

Yes, ladies and gentlemen, once more “we live too nice.”  Never you mind that we have only two windows, three sliding glass doors, and cannot go out because people let their dogs run rampant.  Never you mind that we have to take our trash to the dumpster, and the mail doesn’t come to our door unless it’s a delivery that requires signature.  Never you mind that “luxury” is a throwaway word…we pay too much for this place, and we know it.  Now, it seems, J doesn’t pay enough…

It doesn’t help that I don’t feel well.  Let’s chalk it up to menopause and let it go at that.  I go back to the doctor tomorrow, and we’ll see what she says.  Right now it’s a major impediment to my daily life; I am not fond of having to stop three times while climbing a flight of steps.  I am not fond of being told I’m profoundly anemic, being given pills that resemble shotgun shells, and STILL feeling like crap.

So back I go, and hope that this is a matter that can be resolved with a minimum of fuss because, surprise surprise, J is the priority here, and -like many other parents in the same situation- we don’t have J-care coming out of our ears.

That’s my rant today…

Limoncello would totally drain me.  Lemonade it will have to be…

Some mornings are just too much…

Anxiety is a bitch.  J’s anxiety is a relentless bitch.  J’s realization that he is stronger and bigger than I am makes his anxiety a hard-to-handle relentless bitch.

I say this because we went to the Social Security office today, and I had to take files.  J was not happy seeing the files.  They stress him out so he wanted to put them away, and I had to say NO, WE NEED THOSE.  So he tried to get to them, and I tried to redirect him…and he became, quite quickly and determinedly, a wall.

A stone wall.  A tall wall.  A firm wall.  A deeply-rooted wall.  A wall with no openings, or weaknesses.

This became an argument, and I ended up hating myself.  I always end up hating myself when J and I have a disagreement, or when I need to impose what needs to be done in spite of his anxieties.

We sat in front of the SSA employee looking, I’m sure, quite exhausted.  J had a bruise on his lip, and I made sure to tell the man “this causes him anxiety.  Having to go through this, bringing him here, it can be a problem for him because it is too abstract for him to process the thought that he needs to prove he is who he is, and who he is is a citizen of the United States.”  I didn’t do it to be mean, but I wanted to make sure that, after confirming (not providing) all the basic information about J’s birth, there really was no need for all this to be done…  He asked, very kindly, for a copy of his birth certificate and I, who want to make sure this doesn’t happen ever again, provided him with it, J’s original Social Security card, J’s Selective Service registration card, and his identification.  I made sure that the file is complete, and that J doesn’t have to worry about being dragged to an office because someone doesn’t believe he is who he is.

As I said: I merely confirmed the information that was popping up on the Social Security computer system.  Name (which they gave as First and Last, and I clarified was First-Middle-Last-Hyphen-Mother’s Maiden,) birth date and birth place.  Everything was already in there.

I was not angry.  I was very dignified.  I wore a dress, heels, my hair neatly pinned in a bun…we were both neat, clean, properly dressed, properly equipped with paperwork.

The man whose letter summoned us looked humbled.  It might have been because I stated “the purpose of this visit could have been stated with more clarity; there was no need to generate anxiety.”  The other employee who was helping us agreed, and I’m sure that whatever training takes place on Wednesday afternoons (they close at noon for that purpose) might involve a quick mention of conveying a clear message when communicating with beneficiaries and their representatives.

J was nervous; he used the iPad to entertain himself, and when it ran out of batteries (his apps are never the low-consumption ones) he took my phone and, with the Proloquo, kept asking to call a TAXI and go HOME so he could EXERCISE, eat PIZZA and do a LEGO.  This was done frequently enough that the person whose computer was moving as slowly as Flash in Zootopia looked like he wanted the ground to open up and swallow us.

But it’s done now.  I feel exhausted.  I am hoping that J and I can make up for this morning’s kerfuffle, and that we will forgive each other for re-enacting the whole stanza about the RAM and the DAM in the song High Hopes.  There was a time when we were more the ANT and the RUBBER TREE PLANT, but…  (By the way: A Hole In the Head, the movie in which High Hopes is performed by Frank Sinatra, is a really good non-It’s-a-Wonderful-Life Frank Capra movie…just in case you feel like watching it.  And, on the subject of Capra: look up Five Came Back on Netflix.  It’s totally worth your time.)

Off I go.  We’re getting to the part in The Sound of Music where the kids sing The Sound of Music to the Baroness and Captain Von Trapp joins in, and by the time they sing So Long, Farewell I’ll be getting ready to pop his frozen pizza in the oven.  By the time we get back from the mail it will be ready…

And we’ll find our center again.  Maybe we’ll find our balance.  Quite possibly, I hope, we will be peaceful and un-wall-like and un-ram-like…  High hopes…high apple-pie-in-the-sky hopes for that…

Remember, girls and boys, boys and girls, communication is not just about talking…it’s about conveying meaning…a little understanding and clarity go a long way…

Sigh…

Wild thing, you make my heart sting…

Our oldest son, always known here as TGG, got married on Friday.  Because of a disagreement we had over the weekend, we only got notice of his intention to do so via text.  Confirmation came over iMessage on Friday night…from someone who saw it on Facebook.

I gave Facebook up months ago, and actually went back on to see if there were pictures.  I’ve been blocked.  Oh, well…  I deactivated the account again.  I will not be sucked into the drama because, well, I’ve come to realize it’s really not worth it.

So we’ve spent the whole weekend wondering how we became the villains straight from central casting.  We’ve reached the conclusion that we suck so badly our entire experience raising children has been part of a delusional alternate universe we live in…

Something in the posting our son and his wife put on Facebook caught our attention.  Stay wild, stay true, stay you.  Not being up on all the youthful lingo of the hipster generation (which they claim not to belong to,) we assume that this is some sort of call to arms.  We are baffled: our son has never been wild (tattoos notwithstanding…he is possibly one of the more timid people we know,) and as for being true and “you,” well…this is the kid who used to be tremendously unique until he realized that the other kids made fun of him, and he relinquished his uniqueness so he could embrace the “generational uniqueness” that all his friends professed.

My dad used to say that what we all have in common is that we want to be unique.  More often than not it is the people who sustain the barrage of abuse from their peers who fly the flag for uniqueness.  If you sublimate, you are saying “thank you, I will blend in until such a time when I am comfortable with not sublimating.”  Our son became one more of the long line of kids who got tattoos, earrings, listened to rap or heavy metal, and acted like the world was an unjust place without ever really understanding that he was doing all this from the comfort of his middle-class existence.  He was “edgy!”  He was “rebellious!”  He was “wild.”

The results of this are two children by two different women in less than three years; a wasted semester in Nursing school; living from meager paycheck to meager paycheck, and complaining about how hard he has to work for said meager paychecks.  And, of course, the attitude that WE are the ones who have NEVER understood him.  How dare we???!!!  He just wants to be…wait for it…HAPPY!

In a nutshell, we are bad parents who don’t understand, and we bring him down.  We are lame, and that’s why we don’t understand.  I believe Busby Berkeley had a sequence in the movie set to this tune; I’m sure Cecil B. DeMille had a cast of thousands performing a scene where this was the gist of it.  Francis Ford Coppola, Lasse Halstrom, Steven Spielberg, Wim Wenders…they’ve made movies about this, I’m sure.  The entire musical history of the Sixties, Seventies, Eighties, Nineties, and so on and so forth has documented this feeling…

Parents of young adults who think they are entitled to whatever it is we do for them: we had it coming.  We suck.  We had best sit here and accept that we failed.  As they raise their iPhones in the air, shake their fists on Instagram, Twitter and Facebook to protest our lack of understanding, let’s take a moment to look deep inside and see the swamp in which our lack of parenting skills is steeped.

We wanted him to get an education.  We never demanded straight As; when he wanted to be an actor, we encouraged him.  He liked to draw…I have lost count of how many sketchbooks, pencils, materials we’ve bought over the years.  He had a guitar, a keyboard.  He was interested in them for about twelve minutes in total.  He wanted to learn swimming, be a Cub Scout, play soccer…we acquiesced.

He wanted an earring.  He wanted tattoos.  He liked to dress like James Bond.  He wanted girlfriends.  He wanted to not be subdued by parental demands for academic excellence; he almost didn’t graduate high school because of his grade in Baking.

His first car, granted, was a Saturn, but then he had other cars.  Against our better judgment we allowed the Playstation, the Xbox, the GameBoy, and the countless hours that were necessary to become well-versed in all sorts of games.  When he wanted to get a job, we signed the paperwork so he could work.  When he graduated from high school (I think his Baking teacher simply didn’t want to deal with him over the summer,) he traveled to NYC with his friends, and went to see plays on Broadway.  When he was sixteen we bought him a suit, shirts, ties, shoes at Men’s Wearhouse.  They weren’t cheap.  He also had a video camera; he was going to be…wait for it…a filmmaker.

When he knocked up the first girl we were supportive.  Disappointed at his lack of precaution, but supportive.  We made an overture, and his child would come visit.  Then he hooked up with another girl, and away went every illusion that school was a priority.  And then came the second kid.  And now he’s married.

In the interim we’ve bought tires for the car, a bumper, paid handsomely for chores that I could have done myself for free, filled his freezer, and so on and so forth.  When I called him out for saying something callous about my mother, that was the end of it for him.  How dare I misinterpret something that he, and I SHOULD KNOW THIS, didn’t mean that way!!!!

Yeah, you know…I probably overreacted.  My mother is old and frail, and -at my relentlessly advancing age- I am struggling with the understanding that being parentless is not too far in the future.  That I will lose whatever link there is to my childhood, to understanding why my mother never quite “took to me” is not easy.

On top of that, my friends, my body’s aging is causing mild-to-moderate health issues.  And I have to, in the midst of this, prepare for the next stage in our lives, and deal with being J’s primary caregiver 24/7.  I could have been a little less angry, but non-apologies and arrogance are something I have very little patience for these days, especially when they come from someone who flatly refuses to meet us halfway.

In light of that, we have decided to embrace our status as bad parents, and we are baffled, but we are accepting.  We know there will be whispers, and gossip. The world thrives on that, and we could address them directly and call out our son in all the public forums he has made his own, but we don’t have the energy for that.  We have places to go, and things to do.  We won’t drag J into it…J doesn’t deserve that sort of shit.

“Stay wild.  Stay true.  Stay you” he posted.  We hope they are happy.  Life can be long, or short, but it will always -inevitably, mercilessly, relentlessly- be full of surprises, and wicked turns.  We have done all we can, and we will take this stinging sensation elsewhere, and there we will recover.  And we will find  a new way of being proper selves because WE have always been wild, true and very much us.  Unrecognizable to our son, who has led a life of privilege without even realizing it, but wild, true and very much us nonetheless.

When I married the absolutely inappropriate man the first time around, my parents were present.  They were not thrilled, but they were there.  They looked mildly horrified and resigned, but they were there.  So were our friends and family.  I made my declaration of independence, my grabbing-life-by-the-balls very public.  Every choice was bold and misguided, but I was proud of the fact that I was fucking up in my own terms.  When Dada chose to marry me, he did so boldly, proudly, even in the face of people thinking “what is he doing?  He’s marrying a woman with a child who has Autism???  What a moron!!!”  We had witnesses; we were thrilled at the community spirit of our declaration of boldly going into the great unknown together.

We managed, somehow, to raise someone who declares his independence through Facebook and text message.  Ah…this generation.  Selfies, but no self-assuredness.  Go figure!  “I take thee, and we become we…we must change our Facebook relationship status.  Take THAT, bourgeois parents!!!!  We are wild, free, true…”  Whatever…  Sigh….

Wild middle-aged parents of the world, UNITE!  We did our best.  It’s time to move on.  🙂