After a long break, and some ups and downs…

It is now June.  We’ve done a lot, and have had a lot done to us, in the past few weeks…

The children visited in early May and J was enchanted by his little niece.  She is a little over a year old, and she is a charmer.  She also happens to think that her Unc is Shrek so that is both cool and almost completely accurate (because J is very handsome and not green).

In late May we had a medical emergency (mine) that involved a rushed trip to the doctor and a quicker conveyance to the actual hospital.  I’ve obviously recovered, but there are things that need to be addressed still.

Dada has a permanent job (and health benefits!!!!) and this is a cause for great rejoicing. He is closer to home (although traffic can still get pretty sticky), and -as was the case on the day of the medical emergency) he can be here with less stress and strain.

J’s med had to be shifted again.  The Risperdal is gone, baby, GONE!  The Prozac has inched-up ever so slightly.  For someone his size, he is still taking very little Prozac, and the effect is positive, but we are still in the tweaking stage.  We’ve had our ups and downs (which seem to be alleviated when we talk to the psych…WHY is it that things sound less daunting when one says them out loud in the psych’s office?), but we seem to be ticking along quite nicely.

J has lost weight.  He’s lost about fifteen of the extra pounds he was carrying on him, and it shows.  I have to go into his closet and take out the oversized pants that now fall off as he walks…  He still enjoys his treadmill time, but he chooses “break days” when he’d rather not do it, and I don’t force him.  The humidity here helps him sweat a lot more so whatever time he spends walking around outside is only a fraction of how much he sweats when he’s on the treadmill in the garage.

In other developments, a few days ago I was miffed with J because he was in “pilot fish” mode and wouldn’t stop following me around…all too closely.  So I told him he had to bathe himself and I’d stay in the hallway.  He was initially hesitant, but now -I’m very happy to report- J is basically taking his bath with me spotting him rather than me bathing him.  This is a huge thing for both of us.  He still needs help shaving, but we’re working on that, too, and clipping his nails, but giving himself a bath is something with which he is comfortable and at which he is adept.

The situation with the dog is slowly improving.  J has yet to fully warm up to her, but he is more trusting of the control we have over her.  The dog is still a puppy (not yet six months old) and is full of energy and enthusiasm that often cloud her ability to be totally cool when she sees J.  That’s the thing: she LOVES J, and she wants to -above everyone else- play with this human being who is the last bastion of resistance to her overwhelmingly cute puppy charm.

Like any living creature who thrives on affection and attention, the pup wants it most from he who doesn’t yet give her any.  Now that she’s bigger she seems sturdier to him, but she still has all those teeth (and that desire to chew-lick on people) and that 0-to-100 MPH tendency that makes J think “oh, no…here she comes!!!!”  In spite of this, and we REALLY are working on it, we are making progress…the dog is learning to sit when J walks into the room, and her efforts to control the desire to steamroll over him with her love are admirable even if the sound of her tail smacking the floor repeatedly at high speed is quite loud…

We tick along nicely…or as nicely as two middle-aged people, a 23-year-old adult with a developmental disability and an enthusiastic and still-awkward puppy can tick.  We are learning each others’ rhythms, and we are figuring out each others’ quirks.  The dog sleeps all night.  J sleeps all night.  Dada sleeps all night.  I know this because I don’t sleep all night.  There’s always one more detail, one more hurdle, one more snag, but we figure it out.  We think that once the puppy is spayed she will chill a bit…or maybe not.  We think once J realizes that he is (as with his nieces and nephews) significantly taller and more imposing than the puppy, he will understand he has more control than she does.  We work on these things…we worry and we work.

The medical emergency (a thing we have long feared and dreaded) taught us something amazing: we have lovely neighbors who actually care about us.  (Yes, we antisocial people have lovely neighbors and the feeling of affection and familiarity is mutual…go figure!). We also learned that J will react coolly in the face of seeing his mother in the hospital on a gurney with IVs and such stuck to her body.  We learned that FaceTime is awesome because it will give J a sense of normalcy while one of us (namely ME) is not there for the very first time EVER at bedtime…

We also learned that we need to be even more prepared for the possibility of catastrophe striking.  The medical emergency was a medical emergency because it was, as emergencies tend to be, unexpected.  We were unprepared and still managed to be graceful about it…nothing like walking into the ER and being asked “are you alone?” only to answer “yes” and see a look of contempt from the intake person until you add “…and no…I am alone right now because my husband is trying to make sure our disabled adult son is ready to deal with coming to be with me.”  From thinking “here’s this woman about to faint and she has no one” to thinking “well, this is more complex than I imagined and I should be a little more helpful emotionally” it was one short, quick step.  By the time, hours later, that J and Dada came to see me, everyone who was taking care of me was a lot more prepared to help my family too.

So that’s it…that’s where we are.  I hope you are all well, and that I haven’t missed too much.  If I have, I apologize.  It’s been Life around here…you know…like in your homes…

Off I go…to tick along nicely…

 

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The Titanic had a flaw, too…

One month (and a week) into having a puppy, we are making progress…with the puppy.  J is still not particularly keen, but the ah-AH! has dropped in pitch and volume though not in frequency.  This, of course, in spite of the puppy being a lot less rambunctious and spastic than she was in her earlier days here.

We have become a household of baby gates.  This is a bad thing in a sense, but a good thing in another.  A bad thing because we have a lot of baby gates and no baby, and a good thing because the dog is learning boundaries and J is understanding that we accept this is a part of his process.

We are 98% housebroken.  (Part of the remaining 2% is me…I’ve reached that age when the sound of running water makes me dash to the bathroom.  Have I mentioned we have a pond with a waterfall out back, and that I am often in the kitchen or laundry room?  Yes, I’ve spoken to my doctor.  No, it’s not a serious problem, but I’ve been reminded that I really should NOT wait until I ABSOLUTELY have to pee to go to the bathroom.)

J’s lengthy and persistent complaints about his tummy got us a referral to the gastroenterologist.  Long story’s short version: he is not quite at the level of IBD, but might be at the level of IBS.  There is nothing major going on (five tubes of blood pronounce him as healthy as can be except for that pesky inflammation he has been carrying around since December), and he’s taking a very expensive antibiotic to help resolve his current issue.

That doesn’t stop him from complaining.  Today it’s a tooth (that is no longer there), or his shoulder.  Tomorrow it’s his tummy or his forehead.  The day after he will find something not-quite-right with his nose.  What he wants to hear is that he’s OK, and we tell him this frequently, fervently and insistently.  Whether he believes us or not is another matter entirely.

In other news, Risperdal is -again- out of the picture.  He took his last dose on Saturday night (which means he will be feeling the effects of its absence any second now), and we’re just on the Prozac now.  We think it’s been a positive change for him.  Of course, it has brought out parts of his personality that we were mostly unfamiliar with…

I give you: The Big J-Lebowski…

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It’s not that he looks or acts stoned, but J is definitely in more of a chill-out vibe lately.  It isn’t unusual for him to want to stay in his room until mid-morning rather than, as he used to, run out of there in rampage mode in the wee hours.  His jolly, carefree attitude resembles Scarlett in Four Weddings and a Funeral and Poppy in Happy-Go-Lucky…

The only glitch is his insistence that he might be unhealthy, and that could be just his way of commanding attention.  It’s J’s way, we think, of making sure we’re listening and responding to him.

That is not to say that something is shifting in the way that J interacts with us.  He has realized that he is a 23-year-old living with his parents.  He has realized he is no longer a child, even if he knows that he still needs us.

Case in point:

A few nights ago we went to Target to pick up his prescription, and to buy some things we needed.  J wanted to go shopping and he was very excited about the outing.  I went to take care of the pharmacy errand while J and Dada walked around getting other things on our list.  As we were waiting to pay at the register, J said SODA.  I said no, you’ve had yours already.  J insisted.  I said NO.  J flicked his chin with his fingers while saying SODA.  I said NO, and PLEASE STOP.  J flicked his chin some more and said SODA.  I put my hand on his arm to guide him out of the store so he could calm down…and J, all 200-plus pounds of him, stood firm.

I could not move him.

Furthermore, I could feel that he was gently resisting my attempt to move him.

Dada managed, not without effort, to take him to the car, and I finished paying for our purchases while the cashier looked at me with a mild degree of disapproval in her eyes.  I made a point of apologizing for J’s behavior, and she said “that’s ok” in that tone that indicates it’s not OK, but what else is she supposed to say.  I said “he has Autism.  It happens.”  Her face shifted a bit.  I thanked her and walked out.

As soon as I got to the car, I let Dada load up the trunk and I went to J.  The first thing he said was SORRY, and I said “that’s fine, but you cannot do that at the store.  I am upset. You’d already had your soda.”  With that, I climbed in and we drove home.

I spent a long night tossing and turning in the dark.  All this time, I thought, and J knows not to do that.  Why did he do that?  Why did he not just insist, but resist?  Jesus, Mary, and Joseph!  And we’re thinking of taking off the Risperdal for good???

It was probably three in the morning when the dog needed to go outside; I got out of bed and went downstairs.  As the pup ran out and disappeared into the dark for a few minutes I had an epiphany of sorts: J wanted a soda.  J is a 23-year-old man.  A regular, run-of-the-mill 23-year-old wouldn’t even stop to think to ask for a soda.

I’m an idiot.

A couple of hours later, as Dada and I sat discussing the agenda for our psych appointment later that morning, I said “you know, maybe -just maybe- we need to chill out a bit.  J is 23.  What were WE like when we were 23?  I don’t know you, but I got MARRIED at 23…and that was just because I wanted to spite my mother who wouldn’t let me BREATHE without asking her.”  Dada agreed with me.  Later that morning I related the incident to the psychiatrist, gave him my take on it, and he agreed that this was very likely the motivation behind J’s reaction.  I told him that all I want is for J to feel as “normal” as he can within the circumstances, and that -perhaps- what needs to happen is a little more give and take.

The next morning we went out to run an errand, and I asked J if he wanted a soda.  He looked at me as if I’d just offered him a date with Katy Perry.  He said SODA PLEASE, and I pointed him to the fridge where they had displayed 16 oz. bottles.  He grabbed one.  When we got home, he went straight to his snack box, removed his 12 oz. can and put it back in the pantry, replacing it with the bottle he’d just purchased at the store.

I think that’s progress…

for both of us.

Two weeks in…bitter disappointment

J is simply NOT keen on the puppy.  He loves the concept of her, but she is still all teeth and rambunctiousness, and he is not into it at all.  I hear a lot of high-pitched screaming if she so much as looks like she might approach him, and I sigh a lot.  J gets anxious.  I have tried to reassure him but he’s not willing, and I committed to the puppy so the puppy stays…

My sanity might fly out the window, and the puppy might spend more time away from J than intended, but the puppy stays.

Michael Corleone didn’t feel as much disappointment and animosity for his brother Fredo than J feels for the poor puppy who, let’s face it, has done nothing other than be a puppy.  Yes, as I said, she’s all teeth still, and she’s reluctant to give up on attempting to chew on us, but that’s what puppies do.

I’ve tried to explain this to J.  Remember how he wanted a dog?  Dog?  Dog?  Dog?  DOGDOGDOGDOGDOG?  Yeah…I am still wondering why I listened to him at all…

If Autism and Anxiety are less than helpful Menopause is not exactly winning any ribbons for cooperation.  It’s the Three Musketeers of disaster galloping through the house while slashing at curtains, blinds, upholstery and water bottles with very sharp swords.

I am trying to have a sense of humor about this.  It’s not working.  I am trying to be calm and cool and collected.  That’s not working either.  I put a lot of effort into being patient and understanding with J and the puppy.  Massive failure.

I think the stress of a lot of things is accumulating.  I think it’s actually brimming over.  Between J’s hypochondria (doctor’s appointment on Friday to determine if there IS something wrong, or if this is attention-seeking behavior…), Dada’s annoyingly long commute, the dog’s objections to being exposed to weather when she has to do her business (seriously…a Golden Retriever who doesn’t want to get her paws wet?  SERIOUSLY?),  and J not even remotely trying to be slightly chill about getting closer to the dog (even when she’s on a short leash, calm and under my absolute control)…I am frayed around the edges.  I am brittle.  I am exhausted…

The puppy was a bad idea.  The Dog Whisperer, by the way, talks a lot about himself in his books, and not enough about what the heck I’m supposed to do to make sure the dog knows I’m the leader of the pack.  I am assertive.  I am calm(ish…I cannot swear on a stack of Bibles that I am totally calm…and the dog probably smells fear, anxiety, Autism and Menopause in there somewhere).  The dog isn’t convinced that I’m the one in charge even though I’m the person she follows around like a demented pilot fish 98% of the time.  Most of the time it feels like the one getting trained within an inch of her life is me.

I have read books, worked with the dog, used the clicker, used the cage, used the leash, used rewards, used a stern but kind voice.  I have walked her, petted her, encouraged her.

I’ve done the same with J.

I have reached the conclusion that they are exactly the same so it’s extremely strange to me that they don’t seem to get along yet.  He hates the wet ground and so does she.  He hates being told what to do; so does she.  He expects a treat for no work; so does she.  He doesn’t listen when I talk; neither does she.  When he wants something, he wants it NOW; so does she.  When it’s mealtime, he’s all over it like hairs on a gorilla; so is she.

I’m sure they will eventually warm up to each other.  The teeth, however, are an issue right now…as is her youth.  She is still too playful and too clueless as to why her playfulness might resemble a bear mauling a human being.  If my sister’s dog hadn’t nipped at J nearly 20 years ago, and if a fuss hadn’t been made as to the well-being of the DOG rather than the child things might be different.  If my sister, who never had kids, had understood how J would FOREVER remember that the dog was more important, even though the child was bleeding, scared and crying, things would be a lot easier.

This might take months.  In fact, this might take a year.  For the dog to chill out enough that she’s capable of stopping and being calm in J’s presence (right now she thinks he’s just a rather big person she wants to climb on, and he looks chewy!!!) she has to mature some more.  J has to mature some more.  I probably need to mature considerably.

In the meantime, here we are.  I work on the dog’s obedience every day, and on trying to persuade J that she is not an Agent of Evil.  The trait of stubbornness they share is uncannily similar in intensity.  If there is one thing I really hope doesn’t happen it is that the dog takes as long as J did to figure out the bathroom situation…eight years is a long time.  I’m committed to making this work, and I am working on it assiduously…that the results are spotty, and J’s support is nil is beside the point.  If I can get the dog to a point where she gives out chiller vibes to J, then I will have made progress…I think.

Until then I work on not losing what’s left of my mind, taking care of everyone, figuring out the details of the whole thing, and preserving all area rugs (a kitchen mat has been declared unfit for service after the dog baptized it twice in spite of thorough laundering).  I had forgotten what having a toddler is like, and now I’m dealing with -basically- two of them.  Distraction and hyper-focusing are par for the course with both J and the dog, and irascibility, becoming overly excited and pecking at me also figure into the mix.

But it’ll work out, I’m sure, in the long run.

Right?

 

 

Self-inflicted crises and other maladies…

First and foremost: we are well.  A little harried and tired, but fine.  Everyone’s health, thank goodness, is pretty good.  I won’t say it’s awesome…we are, after all, entirely human and aging; this makes us prone to aches, pains, and petty ailments that cannot be considered “illness”, but that still trip us up in our day-to-day life.

J is doing well.  Last week, and this is part of the reason I’ve been meaning to write but haven’t got around to it, they called to tell us they had a cancellation and would we like to take him in for his dental procedure on Thursday.  You don’t spit in the eye of these opportunities; you seize them.  And we did.

Before the dental procedure, of course, came the first minor crisis we had to resolve.

A week and a half ago J’s beloved iPad started freezing and turning off of its own accord. Off we went to get a replacement.  We now have three iPads; two are back-ups (of course) and there’s the new one (with lots and lots of memory) that is for everyday use.  Picking up the iPad required a trip to a mall we’d never been to, and J was fascinated with the place: Disney Store!  Lego Store!  ThinkGeek Store!  Money flying out of mom’s wallet!  But we found a Lego he’d been looking for, and J found some cute t-shirts and pajamas for the kids.

The iPad crisis of 2018 sent us on a dash to solve it.  That it happened BEFORE we found ourselves in the ACC with a faulty iPad that would cause J anxiety we are very grateful for indeed.  The unexpected call about pushing his dental procedure to NOW rather than May put us on our toes…

Of course, this made a week that had one appointment already on the schedule even busier.  On Wednesday it was the psychiatrist, and on Thursday (in the wee hours of a very dark, very rainy morning) we started our trek to the ambulatory care center.  I will say more in a moment, but let me get to self-inflicted crises in my roundabout sort of way.

As you all know, J is deathly scared of dogs.  In spite of this, he has been consistently asking for a dog since sometime in early winter.  We did our trial runs of going to the pet store with no push-back or hysteria from J, and we told him (repeatedly and clearly) that if he wants a dog he can have one.  His insistence didn’t wane if anything it waxed.

We discussed this with J’s psychiatrist, and we threw in (for the sake of being honest) that WE want a dog, and we don’t think that J should unequivocally and unilaterally rule everything about our lives simply because of his Autism, and his fear of dogs.  We believe, we explained, that J can overcome his fear if the dog is trained properly, and the psychiatrist, much to our surprise, agreed and encouraged us to do something for ourselves for once.

One result of the visit was that J is up on the Prozac and down on the Risperdal.  That is: he takes more Prozac now, and he’s down to one-quarter milligram of the Risperdal.  We move closer to the intended goal.

And so Wednesday, immediately after the psychiatrist’s visit, we drove out to the pet shop.  J was absolutely chill about the whole experience.  And, believe me, there were LOTS of dogs there…some loud, some mellow, some hyperactive, some big, some small.  We had seen that they had just received a female Golden Retriever puppy, and we asked to see her.  J didn’t balk, squeal, squeak, jump, cower; he was all smiles.

We returned later in the afternoon.  J didn’t want to interact with the puppy, but he smiled at her and kept asking for her.

Thursday morning we traveled to the ACC, and J was in the OR for four hours.  He behaved beautifully during pre-op and he had a bit of a rough time coming out of the anesthesia.  We explained to new anesthetist that he had trouble waking up and being functional the last time around, and -thanks to modern technology- she accessed his medical records and concluded that he had been over-medicated.  They had given him enough to keep him pliant and then some for a good long time.  She didn’t agree with this course of action and asked if we were ok with the less is more approach.  Considering that J had been in the recovery room for a long time, and seemed groggy for quite a while after we took him home, we told her to proceed in what she thought was best for him.

They had to remove three molars (he is blessed with strong roots and crappy teeth, it seems) so he now has had to learn to eat with the molars on the right side of his mouth.  It’s not his favorite thing, but he has rallied.  He had a bit of nausea and was wobbly for a while, but the anesthetist explained that he would bounce back much more quickly this time around.  She didn’t lie.  Once we headed home and he realized that he could relax when he got here, J was happy and mellow.

He spent a good part of the day relaxing in his bedroom watching Lady and the Tramp, eating vanilla pudding, and not complaining of pain or discomfort.  The only time he had to take Tylenol was on the second day, and that wasn’t related to his teeth; he had a bit of a headache which is normal after anesthesia.  Prudent eating, resting and learning to navigate his new dental arrangement helped J recover and he was his usual self by early Saturday morning.

We took him to breakfast and then we went to the pet store.  And now, my friends, we have a dog.

J is still prudent and mildly guarded around her, but we’ve established sufficient boundaries to satisfy him for the time being.  She has a pen where she hangs out while we eat, a comfortable cage where she sleeps (through the night until about 4 a.m. when she needs to go out), and J is inching closer to her every day.  It will take training (for the dog, J and for us) but we will coexist rather happily in due course.

Of course, that is what I mean by a self-inflicted crisis.  We have, in only a few short days, gone from a household that was neat and organized to a house with dog treats, dog toys, puppy pads, leashes, clickers, bowls and a wagging tail.  We keep strange hours now, and we have baby gates that we didn’t expect to have until the grandchildren came for a visit in April.  J has a baby gate on his TV room doorway with a sign that reads NO DOGS, PLEASE.  There is another baby gate to keep the puppy out of J’s bedroom when she comes upstairs (which she only does at night).

J makes sure there’s always music playing when she’s alone downstairs (because I do have things to do elsewhere in the house), and that she is acknowledged when he walks in or out of the area where she is (between the sitting room and the dine-in kitchen, where the bulk of our time is spent throughout the day).  When it’s time for her to go out, he watches through the window with enough interest to make me feel he will soon want to come out with us.

It’s a process.  A self-inflicted one.  A minor crisis to disrupt our previously somewhat calm life, but we’re all working on this new thing.  We’ve explained to J that the puppy is a baby, and we will teach her how to behave.  I am the boss, I tell him.  I am responsible for her, and I am the one who will teach her (and J) how to occupy the same space peacefully, but it’s not an overnight thing.

I hope I’m right.  I know this dog has a sweet nature (even though she is a puppy and, by definition, rambunctious and disorganized in her thoughts and actions still), and she will make J a good companion.

Those are the latest developments.  I will keep you apprised of our progress with the new addition to the family, and the existing members.  We are up to our ankles in puppy things, and consulting the Dog Whisperer frequently…let’s see how that goes.

 

 

 

 

How many horses did you say? Well, yeah…them too.

Things are not good.  Or maybe they are, and I’m just not seeing it.  I’m probably not seeing it.  It seems to be a recurring theme.

I am, at this particular point, more frustrated with myself than I am with anyone else.  And, believe me, I am very frustrated with everyone else.  Imagine then how frustrated I must be with me.

What I am going to tell you now is not intended to elicit sympathy, empathy, antipathy, comments, suggestions, criticism, encouragement.  I am simply going to state facts that might, perhaps, help me figure out why I am so very upset lately.  Even if you know me outside of this little world, please, don’t come forward with anything that you think might pass for a positive response.  I’m just talking to myself and hoping others will listen so they can realize there might be someone in their circle who feels the same way, and that might lead to, I don’t know, something good elsewhere?  Is that stupid?

Look, my mother was mentally ill all my life.  She was mentally ill all my siblings’ lives and during her marriage to my father.  Her mental illness touched many lives; people who worked with her, who were in a car next to her’s while she drove down the freeway; people who were in the grocery store while she shopped, or who made the mistake of attempting small talk at a gathering.  It affected doctors who treated her, her children, her husband, her mother.  My mother’s mental illness traveled quite happily in the genes she passed down to four of us, and we have, somewhat diluted, passed down to our children.  I am sure, however, that she wasn’t the first contributor because, somewhere in the mists of far-gone history, there is another unknown ancestor who started this ball rolling.  Mental illness is a thing with every family, but not every family admits it’s there or accepts it’s never going away.

Every single day of my life I struggle with “feeling sane.”  I have a lot more good days than I do bad ones, but I still struggle.  Our family life, our home, is a minefield of stressful situations.  I am a happy person in general, but I cannot lie and say that it comes easily.

Talk to any of my siblings and they will tell you a story about me.  They have very clear memories of my life.  They all view my narrative as something very definite, and this has fostered resentment over time.

I could tell you a story about me, but it would mean dispelling everyone else’s version.  I am tired of doing that, and I can’t, regardless of how much effort I put into it, change people’s minds when they are so convinced of what they “know” to be true.  Every story has several sides to it, and I am sure my version of who I am and how I got to be here is heavily seasoned with a desire to justify myself.

I am a happier person than I should be is my take on it.  I grew up knowing about myself, my mother, my family, things that children shouldn’t be aware of because it can break them.  I was raised with a marked pathway towards optimism because – I realize now- pessimism is more my thing.  My aunt, bless her sweet resilient soul, mounted an all-out attack on what she must’ve known was my inclination towards depression and gloominess.  If I was a happy baby and a cheery toddler, after a certain age I was brimming with a combativeness and a sadness that I could not possibly explain to you.  To me, outside of the four walls of my blissful little home and the company of my beloved aunts, the world was bleak and unfriendly.

It is, as the British would slangily say, indeed a cock-up that I find myself NOW in my little home and with beloved family members, and I feel combative and sad because there are so many things I want to fix, change, help with, improve, work on and I can’t.  I reach the end of every day thinking “what did I do today?  I did nothing!”

Again, don’t turn around and message me to say how much I accomplish.  This is about me actually voicing the things that I feel, not about getting patted on the head, back or butt for it.  I just get tired of smiling and being cheerful all the time; I’m exhausted by the whole “Little Engine That Could” act because, right this very minute, I CAN’T!

Yes, I know it will improve, and I know we hit slumps.  I know we all face obstacles, and I have to keep the faith.  I know.  I know.  I KNOW.

I am not looking for recognition, but it would be nice, lovely, heartwarming if my son knew who I am.  Don’t say “oh, he KNOWS in his heart.”  No.  No, thank you.  That I am his mother is not something he knows.  What he knows is I’m the person who dispenses medication, cooks meals, bathes him, cleans his butt, brushes his teeth, loses her patience, consoles him, encourages him, loves him, hates him, celebrates his successes, stands in front of his PECS board trying to make sense of what he wants, cannot hear him clearly because her hearing is failing and loses her patience again…

I am The Presence.  I am The Constant.  My name is a mechanically spewed term for calling for assistance.

My mother spent her whole life trying to fill a void she couldn’t clearly define.  She was so worried about that void that she didn’t really bother with anyone else’s.  The one thing we all learned from her was that voids happen.  The problem with my particular void is that it goes largely ignored by those around me, and also by myself.  I notice myself on the hamster wheel; I feel my legs powering that thing, and I cannot understand what makes me do it until I think of the void, and I realize how complex it is.

Once in a while, I pause to think about it, and it immediately sparks my need for constant movement on that hamster wheel.  I am the child of a mother who never really “clicked” with me, and I am the parent of a child who will never “click” with me.  It is the kind of realization that one cannot marinate in, or it will drive you nuts.

So…there you have it.  Another horse.  So many horses.  Wild horses…

Things can only get better, my aunt used to say.  I really hope her voice becomes louder than my worries and my frustration.  I hope I can channel all she ever said to me, and figure out a way to find my way back to not being so upset all the time…

A horse with no name…

I suffer from chronic pain.  It may not look like it…but I do.  If you are a chronic pain sufferer you know it’s par for the course that you learn to keep going.  It’s not that the pain leaves you entirely.  You just learn to run with the degree of pain and exhaustion you’re feeling and become functional.  I am honest when I say I don’t know what it’s like to not have pain, but I do know when it’s too much to ignore and a break is needed.  I also know when it’s something I can set aside as I go about my business.

I have become used to the fact that people don’t believe I’m in pain.  I am accustomed to the “oh, it’s old age” and “but you’re so active!”  Even doctors have been vague in their commentary in spite of all the bloodwork that’s been done.  I’m too old, I’ve been told, to be diagnosed with SLE…it is a “young woman’s illness” a rheumatologist told me after I waited six months for an appointment.  When I countered that I’ve had these symptoms for a very long time she shrugged and said “yeah, but…you’re not a woman of childbearing age anymore…so…I can’t call it lupus.”  She then shrugged again and, with the most condescending look she could muster, she added, “maybe it’s fibromyalgia???”

I rolled my eyes and said, “well, you’re the doctor!”  Suffice it to say I walked out of there without a diagnosis.  The pain, however, didn’t leave me; it just kept its up and down and up and down and flare up and die down thing…  It has continued to do so after nearly two years.

I bring this up because I feel horribly guilty.  When I say horribly guilty I mean it from the very depths of my heart.  I know what it’s like to be dismissed or to be told I’m exaggerating.  And last night, after spending a whole day observing J very closely, I realized that I have been doing the same thing to him.

Holy shit, Batman…J might be suffering from some similar issue with chronic pain that flares up.  He starts out mildly rusty in the mornings; he gets better and more mobile as noon approaches.  He exercises, has lunch, relaxes, takes his bath, has his afternoon snack, and the decline begins.

The slow decline.  The “I just seem to be getting crankier as the evening progresses” decline.  The decline I recognize in myself but had not noticed in him because I’m dumb.  Really, really, really dumb.  And blind.  And stupid.  And…

Feel free to stop me…

Based on my new found illumination I am reading a lot of papers that I’ve found online, and I’m planning a trip to the library to further research what I’ve found.  Yes, there seems to be a link between fibromyalgia and Autism, but I can’t yet quite understand what the gist of the studies is.  There is, to my understanding, a suggestion that if the mother has fibromyalgia signs and symptoms it is quite possible that the child with ASD will have them, too.  I know, I know…I should KNOW about heredity, but I’ve been told so many times that it’s all in my head that I didn’t make the connection…

As soon as the whole dental work issue is resolved, I will make an appointment for him and we’ll discuss with the doctor what we’re seeing that gives us pause: the fractured sleep pattern (even before the introduction of Prozac), the fatigue as the day progresses, the complaints about aches and pains, and feeling sick.  He has also become more sensitive to some stimuli, and his bowel movements have changed (I know…TMI!)

Yes, the guilt…it’s there.  It’s big.  It’s overwhelming.  It makes me feel like I’ve failed J, but I have to make that a propellant rather than ballast.  If I failed to recognize what I was seeing as something that I’d seen before in myself, I cannot sit down to mope about my lack of emotional intelligence.  I am, instead, going to make a good list with observations, notations, comparisons that I can present to the doctor when we go to have this looked at.

All these weeks I have been thinking that J is not sick, and he is not “technically” sick.  That is: J wouldn’t qualify, to the casual observer, as being unwell.  He goes about his business every single day, and he doesn’t have a fever, any significant pain that interferes with his daily activities.  He has discomfort from a mild infection in his gum, and he has a cavity.  That doesn’t mean he’s sick.  He wouldn’t want to go to a doctor for that, especially after going to the dentist and then to his pre-op appointment on Tuesday morning.

J recognizes a visit to the doctor when he sees one, and he knows he was at the doctor in a hospital setting just two days ago.  He keeps saying he’s sick and he wants to see the doctor because he doesn’t feel like himself.  I know that feeling.  I live with that feeling.  I’ve been told, rather dismissively, that that feeling stems from getting older…and I’ve been feeling that feeling since my late teens and early twenties so, yes, technically it came from getting older, but it also stems from something else.  A twenty-year-old wouldn’t, as a matter of course, be showing symptoms that indicate rheumatoid arthritis; that’s not considered being “healthy”, and J -at the age of twenty-three- is constantly uncomfortable and asking to see a doctor.  Either he is a galloping hypochondriac (always a possibility considering that his father and his father’s family are adherents to this practice and have no qualms concocting some ailment to get out of things), or there is something that needs to be addressed.  I intend to discover what the issue is…

In the meantime, I am reading and researching, and atoning.  I won’t atone through indulgence, of course, because that doesn’t really work.  I will atone by listening more and observing better, and by talking to my son.  Because he needs to know, I think, that I know I dropped the ball.  J deserves to have me acknowledge that my impatience and annoyance with him have been unfair.  He doesn’t feel well, and I went along with the attitude that bothers me when it’s directed at myself.  That was, as I said before, tremendously stupid and unfair.

There you have it.  The horse has no name, and it might be that the name I suspect it should be labeled with is incorrect, but there IS a horse…and it makes its presence felt.  I should’ve trusted the maternal instincts that tell me J is incapable of lying (although he IS fully capable of hyperbole), and that he wouldn’t want to be checked by a doctor (an experience he finds invasive and uncomfortable) without some degree of justification.

I feel humbled.  I feel dumb.  I feel, more than anything else, bound and determined to figure this out for J.  It might take sitting through the Katy Perry movie (for the umpteenth time) to make him feel like my atonement is heartfelt and sincere.  I can take another round of Katy…I think.  Maybe I will be so guilt-ridden as to sit through Camp Rock… but I doubt it…

Let’s work on naming that horse, shall we?

…and the horse you rode in on…

Anxiety is a bitch.  Anxiety and Autism together, my oh my, are even worse.  If you throw in a dash of OCD you’re just looking down the barrel of an embarrassment of riches that could blow up in your face at the slightest provocation.

And then there’s menopause…

After any particularly strenuous battle between J and yours truly there comes a moment of exhaustion and embarrassment that culminates in some Sondheim…”aren’t we a pair?”

I don’t think it’s a misrepresentation when I say that we have a love/hate relationship and that it works quite well, thank you.  Of course, I can see people sitting up like meerkats, suddenly alert to the word HATE without giving much thought to what I mean by it…

Let me explain.

Please?

The ideal flight plan of parenting involves raising a child from birth to an age when they are fully independent of you.  Along the way, I’ve experienced, there are stops and starts, shifts in the balance of power and influence, changes to the way in which those involved communicate, and a redefinition (almost constant) of what each participant means to the other.  Every parent is the recipient of at least one “I hate you” from their children, and they might not hear it, see it, feel it, but it’s expressed in some way by the fruit of their loins.  A door that slams in response to a query or a dictum, an offering of love misconstrued or rejected, a resentment that isn’t voiced but festers for years until (hopefully) it dissipates.

Every parenting experience has as its objective an empty nest.  Too much space in the house, rooms that suddenly have no particular purpose because the occupants have flown the coop, an excess of dishes and cutlery, leftover toys and games and coats and objects that had a purpose and now just gather dust.  The days are supposed to get longer until we learn to fill them up with who we are as people once we’re done raising other people.

Our nest is populated by three.  Our nest will always be populated by three until we start dying off (oh, please…don’t freak out.  It happens.  People are supposed to die…it will happen to us in turn.  Now, please, breathe and relax a moment…)

We are three and those three have to learn to live with each other, sharing a space, habits, quirks, needs, circumstances.  We have to learn this more frequently than we would have wanted to because things shift often around here.  We were once forty-somethings with young kids; we are now fifty-somethings with a 23-year-old roommate who, we know because we’ve been there in the past, is mortified to be living with his PARENTS!

If you have adult children who are neurotypical you are probably thinking “oh, I miss my kid.”  Of course, you do.  Your kid LEAVES.  Your kid either borrows the keys or takes his/her own car to meet up with friends.  Your kid might go away for the weekend, or come to visit for a few days.  Maybe your kid brings laundry, raids the fridge, hogs the couch, leaves a mess…  Maybe your kid tells you funny/scary/exciting/outrageous stories of something they did with friends or happened on campus.  Maybe your kid hems and haws but still eventually joins you for dinner at a restaurant.

You cherish this. You look forward to it.  You treasure every moment.  You watch him/her leave and you sigh, missing them already.

We don’t really get that chance.  We get to miss TGG, but we also get to be grateful that he is now on his own and learning about life from life itself.  We miss the grandkids, the daughter-in-law, the warm and fuzzy family feeling.

J is always here.  Or, rather, J is always wherever one of us is.  Maybe not directly in our presence, face to face, but he’s occupying this space with one or the other of us, or with both.  We go to dinner, lunch, the movies, shopping, for a walk…J is there.  J takes a bath…aside from a brief moment when I might leave him to get another bar of soap or the shampoo he wants that day (don’t ask…please…it’s a thing…), we are in the same space.  There is the outside world…beyond doors and windows, and we are in here…together.

We go to sleep…J sleeps in the room next door.  We are reading in the living room, and J is watching TV upstairs.  We are in the kitchen putting the finishing touches on dinner, and J is setting the table.

We occasionally steal a moment alone in the house (whether individually or as a couple), but J is nearby.  We have nice romantic dinners at restaurants to observe occasions that are meaningful to us; J is there…like the proverbial chaperone.  He doesn’t interrupt the glances and smiles unless he’s having trouble with something on his plate, or requires some assistance.  But he’s there…

By the same token, J knows we’re always here.  Like any dude his age, he probably thinks “Jesus Christ, people, can’t you just…GO???  Isn’t there something you can do outside the house???  Go sit on that low wall in the backyard with a bottle of wine and a candle…go ahead…I can stay in here and not see you…not breathe with you…ugh…you people are ALWAYS HERE!!!”

The nest is not small, and it can feel roomy and private (or what approximates that) depending on what you want to do, or where you are, but…

We get on each other’s nerves.  It’s inevitable.  We love each other, but we hate each other, too.  As he gets older, J knows there are things he’s missing on, things he could be doing and that could be possible for him if…….  The same happens to us.  We now see ourselves as “damn, I didn’t get to…and I’m never going to…and we’re not going to have a chance to…”

When J is riddled with anxiety for several days in a row, and when his OCD (which he has no control over, and we KNOW this, thank you) takes over and all conflates to make for very rocky terrain, we do get desperate.  We do feel annoyed.  We are tremendously frustrated.

And we curse anxiety.  And we curse OCD.  And we curse Autism.  And the horse they rode in on.  And sometimes we wish that we could change J, and we wonder if he understands how overwhelming it all is for us.  And we realize that it’s, even more so, overwhelming for him.  And that he probably curses his demons, and his fears, and his compulsions.  And the horse they rode in on…

I guess the horses can keep each other company.  Just like we keep each other company…as long as they don’t mate and multiply, we figure, it’s all going to be okay-ish in the long run.