After a long, drawn-out silence…

Here I am.

Well, here WE are.  Our family unit is intact, and -in fact- there are more grandkids than there were when I last poked my head out of the cozy cavern that is our family life.

J is doing well.  J is very far now from being a teenager.  He is a full-fledged adult having hit his mid-twenties (officially) a mere week ago.  Where has the time gone?  (Hint: it’s settled in my joints and bones and wrinkles and the roots of my now-decidedly-gray hair.)

I would like to tell you that we’ve found balance, but the thing about balance is that it involves hard work.  A small shift and whoops! There it goes!  So on days when we’re all working at it, we’re balanced.  We do, however, tilt occasionally.  This is acceptable.  This is fine. This is the way it’s supposed to be.

Anyone who says they feel centered and balanced 100% of the time is full of shit.  My dad, who was a wise and exasperating man, used to say that absolute happiness is boring; you need to know what unhappiness feels like to fully appreciate when you are happy.

In general, though, all is going well.  We found ourselves at J’s psych appointment being tremendously positive about things like Twelve Days (which were awesome because they were low-key and as stress-free as any holiday can be) and J’s penchant for treating us like annoying room-mates (which we are…what twenty-something human absolutely enjoys the company of his/her parental units?  I certainly didn’t…that’s why I got married and skedaddled as quickly as I could).

After two years of living in this house (which we all love madly) and getting settled into our routines and roles as we all age and find our niche in life as it is now, J is so very comfortable in his rooms and home that he has become a bit of a recluse.

Allow me now to expound what this means (much in the same way I did for J’s psych who looked mildly alarmed but was very open to my explanation):

J is happy.  J is content.  J is in no way sad, bored, depressed, anxious.  J LOVES his rooms. J moves around his rooms with the ease of one who is surveying his kingdom.  J is like a cat who has found that, yes, any container will hold its body in comfort.

When J wants something, he asks for it.  When J needs something, he asks for it.  When J is in the mood to spend time with anyone, he does.  When J is compelled to protest, he does so.  When J doesn’t want something, he declines it.  He is not hesitant and he is not rude; J is simply firm and direct.  He is also patient with our insistence on wanting to check on him because we are concerned he might be lonely.  The only thing missing is J patting us on the head and saying “you poor, silly people…if it makes you happy to check on me, OK, but you’re annoying…”  We have installed a Ring Indoor Camera in his TV room, and he is very happy to be called through there rather than having us walk in and interrupt whatever it is he does.

We have seen him lounging (quite literally) on his futon with his arms behind his head, his shoulders absolutely relaxed, his legs extended and a smirk of absolute “ah, this is the life!” on his face.  We have seen him roll his eyes when we call him only to smile broadly when he realizes we’re offering him something to eat.

It had been building up for a while, this desire to not go out.  We had noticed a certain degree of anxiety and ill-humor when we had to go to J’s usual haunts.  Little by little, we started asking him where he wanted to go, and he started making sure we knew he would rather be home.

Don’t imagine, please, that J sits in a dark basement sulking.  Quite the contrary.  J’s TV room is light and airy, and his view of the street and the green area is quite lovely.  He sees the deer when they come out (sometimes a dozen of them at a time!), the cars as they go by, the people who go for walks.  A multitude of birds fly by and the neighborhood cats promenade in front of our house much to the chagrin of our dog.  J can see when his pizza is being delivered from his favorite pizza place once a week; he bounces down the stairs happily and greets the delivery person…they all know him by now.  So do the grocery delivery people: they know his likes and dislikes, and they even remember his birthday.

When he wants to go out, he asks to go and, once he has done what he wants to do, he is ready to come home.  There is no fear, there is very little anxiety.  Perhaps it is that the world is loud and that people are…self-absorbed?  People looking at their phones, in a hurry, talking loudly into little rectangular boxes they carry around.  He used to be more comfortable around strangers than he is now.  Now he’s more comfortable with people he knows, and people who are familiar with his quirks.

J doesn’t mind going to his medical appointments.  He does beautifully.  He doesn’t mind going shopping as long as he’s not going to have to spend the whole day out and about.  He likes going out for a purpose.  J is like my great-grandfather, my great-aunts, my father and me…going out is nowhere near as much fun as being at home and doing the things he loves to do.

There are days when he’s “in a mood”, and there are days when he’s relaxed.  The same can be said of anyone.  In spite of what can be interpreted at self-imposed isolation, J’s vocabulary and skills are…growing!

The young man who needed help for absolutely everything now needs less and less help for things I wasn’t sure he’d ever master doing.  Anyone who walks past the bathroom as he’s laying out all the things he needs at bathtime will think “ah, there’s a dude!”  If they walk past again when he’s getting ready for his shave they’ll go “ah!  There’s a dude who is in full command of shaving gel!”  The first day he did that it was a disaster: we sometimes take for granted applying things to our face as we look in the mirror, but we don’t know how that looks to a person with Autism.  He got the hang of it two shaves later…now he’s totally in command of the process.  He’s even starting (with supervision and help) to shave.

J is even starting to commune with the dog.  Discreetly.  Hesitantly.  Gingerly.  But he’s starting to commune with the dog.

For his 25th birthday, and taking into consideration that he’s been happier hanging out in his lair than out of it, we kept things appropriately celebratory and yet low-key: he wanted Chinese food and a cake.  He got both…in his loungewear.  Balloons.  Streamers.  Sufficient brouhaha to declare that 25 was the number…and then he sat back on his futon with his favorite blanket, his iPad, and his arms behind his head and a smile on his face.

That’s where we’re at…it’s not a bad place to be.

If you want this choice position, have a cheery disposition…

“Cheery” has been in short supply around these parts in the past few months.  We haven’t exactly been miserable, but “cheery” has been more of an effort than it really should be.  It wasn’t so much because things are bad, but rather because some aspects of what should be ordinary and commonplace had been slightly (ok, more than slightly) “out of whack.”

Behold, ladies and gentlemen, one of the unspoken miseries of aging: the failing-in-some-way-other-than-the-one-it’s-supposed-to uterus.  The saying goes that “old soldiers never die, they just fade away”.  In the case of my uterus, that old soldier wasn’t dying…it was rallying to a reveille that wasn’t being played for it at all.  Just when I thought it was finally following the plan laid out for it by nature, the darned thing would go all Jack Torrance on me…

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Yes, I’ve reached the conclusion (as have the doctors) that my uterus (that most defining of all female body parts) had the obstreperous nature and characteristics of an annoying, relentless, mean man.  While other women were being visited by Aunt Flo, I was being assailed by Uncle Jack and his bloody ax.  Months of misery had turned into years, and those years were draining everyone’s patience and my well-being.

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Long story short: the damn thing (yes…damn…no darned for it…DAMN) is out and good riddance.  I’ve been home for a whole week now, and have several more weeks of recovery (slow and patient…not my forte, but there you have it) ahead of me.

As you might imagine, caring for J and doing all that was required of me in that particular area of endeavor had become increasingly difficult.  Needless to say, the erratic pattern of Jack Torrance’s outbursts was making it difficult to keep my cool and maintain a certain degree of equanimity.

J was suffering by association.  His anxiety, when it peaked, was crashing into a wall of hormonal and emotional stress that didn’t bode well for either one of us.  He cannot always properly process what’s bothering him, and I sure wasn’t in the mood to do so…so we were at loggerheads (rather loud loggerheads, at that) at random moments.

Earlier this month I visited my doctor and the options were laid on the table: either we cleaned the thing out and waited out the onset of natural menopause or we went in there and, Entebbe-like, released me from my misery.

I will grant you that, perhaps, I was a little eager to evict Jack Torrance and that colored the lens through which I looked at the situation.  I said “get him out” and out he came.  It was the right decision.  A certain medical condition -known as adenomyosis- had overtaken and angered my uterus to the point of downright unbearable cantankerousness.  Even a cleansing and stern talking-to wouldn’t have solved the issue to satisfaction.

The decision to have the surgery was made seventeen days ahead of the scheduled date.  Between then and the actual day, we told no one about it.  That is: we sat on the news and shared with two neighbors (one who is a Surgical Assistant at the hospital and the other who is a nurse).  The odds that we would run into them there were pretty high…as it turned out, the Surgical Assistant was working and her sister, in fact, was working for my surgery.  The kids weren’t told.  We wanted to keep things on the down-low, and to maintain a certain degree of calm for J while we prepared the house and ourselves for the procedure and the convalescence.

The morning of, J woke up to find the bags packed and -after a brief moment of confusion- he got in line with our schedule.  This hospital was new to him, and he was going to spend the day with Dada rather than with me.  Of course, this had weighed heavily on my mind; always I am the one who waits with him, and now he and Dada would be the ones waiting.  We were a little worried, but I prepared things as best I could.

J and Dada came in to see me at pre-op, and then they sat in the waiting area.  I made sure to tell all the nurses, doctors, etc. to please address J as they explained everything that was going on.  They did a beautiful job.  J was calm and happy in spite of the obvious stress that would be built into such a situation.  By the time I was out of surgery (it took over four hours), he and Dada were tired but relieved.  I told them to go home and rest, eat and come back in the morning to take me home.

I spent the night in a small room with my own bathroom.  I experienced no pain.  I was sore (I’d only had five holes poked into my abdomen and other such tinkering), but I wasn’t clamoring for meds. I managed to sleep a bit.  I ate a meal of potatoes, meat, and vegetables, I read, I walked around (gingerly, carefully)…I worked on meeting all the criteria for release, and -come morning- I was deemed fit to come home.

We’ve been low-key since.  I can do a bit here and there, but I do rest a lot.  I sleep better with every passing night.  My appetite is slowly coming back to me.  J is happy and relaxed, and he has accepted that Dada is working from home and will be until he returns to his office on Monday.   I’m letting thing slide because I want to make sure I recover properly.  By the time I go back to the doctor near the end of April, I want to hear “good job…you’re healing as you should” rather than “you crazy woman…you don’t need to do everything and you’ve botched this…tut-tut, tsk-tsk.”

Each day J and I sit and do something:  fold shopping bags for reusing as trash bags, fold socks, work on vocabulary, do a craft.  He is being proactive about helping Dada with things he usually waits for us to do.  Even the dog is cooperating (she is gentle and sweet rather than her usual bowl-you-over-with-love self) with this period of convalescence.

My cheery disposition is returning.  I am tired from time to time but comforted by the empty space where Jack Torrance used to be.  That the biopsies came back announcing that, other than being obstreperous and aggressive, Jack Torrance was harmless (just a big ol’ bully, really) is even better news.

Always talk to your doctors.  Always ask questions.  Always think of what is best for you and yours…

I’m glad I did.  My health was affecting J and, while this is an inevitable factor in the symbiosis of parenting a disabled individual, it doesn’t need to be prolonged more than necessary IF there is a solution for it.  In putting the kid’s well-being first, I also put mine and Dada’s at the top of the list.

 

 

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?

 

 

We dip our toes into the sea of uncertainty…

It has been an interesting start to 2018.  Not only is J having his usual spikes in anxiety, his mother is having the usual spikes in being a middle-aged woman.  It can get testy around here.  As I have mentioned countless times in the past to anyone who will listen: Autism and Menopause are not the most fun of combinations.

We’ve been, so far this year, to the dentist (not good news, I fear…we need to address a few cavities and, of course, this has to be done through the School of Dentistry because the average dental practice isn’t quite equipped to deal with the likes of J), and to the psychiatrist.

This second visit yielded possibilities, and this morning -with the trepidation that is usually attached to such developments- J had his first 5 mg dose of Prozac.  The word trepidation has been carefully selected; we are anxious about this, and observant, vigilant, concerned.  We don’t know, after reading everything we could possibly lay our hands and eyeballs on, if this will work for J, but the doctor is hopeful that it will.  Since 8 a.m. I have been watching my son like a hawk while trying to not increase his anxiety through my own.

The most J has done so far is sneeze.  He went to bed happy.  He woke up happy.  He had his meds and breakfast happy.  He wasn’t particularly thrilled about my presence in his room, rifling through a box of odds and ends of Legos looking for Lego people.  He observed me patiently, and then he sent me (and my overabundance of Lego males, and not-enough Lego females) out of the room.

We have done the usual: made beds, cleaned kitchen, taken recyclables to the garage, brushed our teeth, gathered laundry, brushed our hair, washed our face.  All this has been done in the way it’s usually done.  J patiently allows me to ask him for help, patiently completes the tasks, patiently gives me a look that says “can I go now???”

I don’t know much about Prozac other than what I’ve been reading that has raised my hackles, given me pause, and prepared me for the worst.  If it is meant to help him with anxiety and depression, it is certainly having the opposite effect on me.  The doctor says that, hopefully, the Prozac will eventually replace the Risperdal completely, and we will see more weight loss (so far I have him at ten pounds lost over the past few months) and a happier J.

We want a happier J; we also want a more functional J, a less anxious J, a J that feels better equipped to let us help him.  The doctor thinks this is the way to go, and we are willing to give it a go, and we are hoping for the best.

I don’t know if it is that we are getting older, but I feel more like a failure than a success these days.  Not in general (though Lord knows that I’ve never really fully realized any potential for productivity I ever had) but definitely in the “how can I help J?” department.  I feel like I fall short day after day, and I wake up wanting to do more and do better.  It doesn’t always pan out.  In J’s world I’m most assuredly Wile E. Coyote with all his ACME accoutrements…on paper they work, and when I go to use them it’s either fizz or a very loud BOOM.    One thing I can say about myself: I don’t give up easily, and I’m pretty used to the sheen of egg on my face.

I do spend a lot of time reminding myself (and Dada) that we are dealing with an adult who, regardless of his limited intellectual capacity to process that he is an adult in just a situation, is living with his middle-aged parents, and that -as we did at that age- he probably feels like there isn’t much he can do to take control of his life.  When I was a freshly-minted twenty-three year-old I married J’s father so I could get away from my parents.  Much as I hate to admit it, J probably views us with the same critical, impatient eye I viewed my parents at the time.  We like to think we are cooler, hipper, more understanding, more open, more accessible parents, but we are parents nonetheless…and J is our son, and he is almost 23 to our mid-fifties.  That, my friends, must chafe massively.

So that’s where we are today, fifteen days from J’s 23rd birthday.  We are embarking on a cruise of indeterminate duration in the good ship Prozac, and hoping to jettison Risperdal in the not-too-distant future.  The map might as well have “here be dragons” written somewhere, but onward and upward with a few sideways and steps back is all we can do at this time.

We will see how it goes.  I will update you.  I go back to my reading, observing…channeling my dear Jane Goodall and crossing my fingers while toiling way in favor of our son…

Egg on face is a possibility I am willing to risk…

Stalker and micro-manager all rolled into one neat package…

Anxiety.  You can read the word wistfully if you’re so inclined.  Go ahead…try it.

Doesn’t quite work, does it?  One tries to read it wistfully and it still comes out with a slight “ugh” at the end…  Anxiety…ugh…it’s a word.  Someone needs to call the OED and have it inserted in there.

This morning J had the decency to wait until 4:46 to wake us up.  Actually, that is when he rustled us out of bed.  I had awakened when he started his pilgrimages to the bathroom.  (There’s nothing wrong with his tummy, by the way…he’s just a big bundle of holiday-related? anxiety…ugh.). With chagrin, but also with deep understanding that this is part of the nature of the beast, I was ready for the COFFEE summons.

It came promptly.  And I took a deep breath before I went to check on our son’s needs.

He was fine.  Happy.  Awake.  A bit of a stuffy nose.  Ready to go WATCH TV!  That’s what he said.  He also went downstairs, following me closely, to get his snack box lined up for the day.  As I made coffee, there was my pilot fish…one step behind.  It’s stayed pretty much the same way all morning since.

I’ve been followed to the mailbox (where I put an outgoing letter), the bathroom (where I had to point out that there are things I need to do by myself, and without any instruction on whether they’re being done correctly…), to the closet, to the fish pond, to the closet where we store the ladder, to the garage.  In every instance, except the bathroom where I drew the line and closed the door on him, J has wanted to tell me what I’m doing wrong.  I’d like to point out that he was RIGHT OUTSIDE THE DOOR when I stepped out of the bathroom.  Yes, it’s been that kind of morning…

He has also, oh joy, found a cardboard tube that used to hold gift-wrapping paper, and he has used it as a megaphone.  He’s pretty good at barking orders that way.  Perhaps some rowing crew somewhere could put him to good use.  Would they row effectively while the words COFFEE, BATHROOM, GOOD MORNING, HELLO, CHRISTMAS are being called out through the cardboard tube?  Maybe…maybe not.

Today the plan is simple: keep J busy and engaged, and try to work through some of that nervous energy that seems to have accumulated when I wasn’t looking.  It’s a good day for it, too.  Clean the house for Christmas, put together a couple more crafts, do a little baking…hopefully we’ll both be satisfied by all this hustle and bustle…

and he will sleep until 5 tomorrow…  Asking for 5:30, let’s face it, is asking for the Moon because anxiety…ugh works that way.

 

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…

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…

Fighting the rising tide…and failing

We knew the weight would pile back on once the Risperdal returned to the mix, but it is nonetheless frustrating to see it happen.  We feel like semi-failures.  I say semi because we do all we can, and we know it…

Of course, the other part of the semi is that we wish we could do more.  J exercises every day, eats prudently-ish (I cannot say he is a role model for not eating anything he shouldn’t, but there is not a trace of salt-laden Ramen noodle, glow-in-the-dark-powdered-cheese macaroni, and so on…  He gets veggies every day, he has a limited amount of cheese, and still here come the pounds, forming a suit of armor around him.

We can tell he is hungry.  We can tell part of it is the Risperdal.  We know some of it is the appetite of a 22 year-old male body.  In order to control his weight in the way we wish we could drastic measures would be required: a ridiculously low amount of calories, a tremendously hectic pace of exercise.  It is, sadly, unrealistic.  We are hoping that the warmer days ahead will allow us to take him for walks on top of the exercise he does in our garage.

This, of course, will only go so far to help us keep his weight under control.  We are still on the “J’s wearing an XL instead of a L” portion of our frustration…we want to keep our frustration at that level.  Last evening, as we sat in the Urgent Care waiting for J to be seen (more on that later,) we were pondering whether he needs a whole milligram of the Risperdal, or if we’re just comfortable with that dose.

Did we go from .5 to a full mg because we’re chicken?  Or did he really need it then, but no longer needs it now?  Since we’re seeing the psych on Friday, I will pose this question. Before then we will do much inner monologuing, much discourse…  There is a certain degree of desperation that sets in when your child (regardless of whether he’s built like a  linebacker, or not) is hurting himself.  You want it to stop.  You might make choices at that moment than you wouldn’t in other circumstances.

Why are we thinking this now?  Is it just the weight?  No, not really.

Yesterday J wasn’t feeling well.  He wasn’t feeling well, and he was going out of his way to prove he was fine.  It was his left ear, see…and he is VERY TOUCHY about his ears.  Many years ago he had to go to the ENT to have a piece of earplug removed from each ear.  That didn’t go well.  At the school (never mind who the teacher was, or why he made such a stupid decision…regardless of whether he won Teacher of the Year for the state,) they had broken an earplug in half, and pushed it into J’s ear.  They were wedged in there pretty solidly, and the removal process was not painless, and it certainly did not lack in drama or trauma.

So our son was being stoic, and I knew something was wrong.  We had a wee bit of an argument.  I discovered how strong he really is, and NO, he didn’t hurt me, hit me, push me…he simply stretched his arm out to block my way (I was trying to Proloquo my way into a doctor’s visit) and I COULD NOT MOVE HIM…  There was no violence, no aggression, no anger…just sheer determination a la Gandalf that none shall pass…and none did.

Of course, J realized that he had done something wrong, and he then hugged me (thus proving his strength once more,) and said he was SORRY.

Anyway, long story short: I saw blood when I gently rinsed his ear with hydrogen peroxide.  A quick glance with the otoscope told me that, yes, there was something wrong in there…  He has an ear infection and, once he realized that it wasn’t going to go away just because he wanted it to, J accepted a visit to the doctor.  We did have a bit of an argument.  It was more along the lines of “I want to help” SCREECH “listen to me” SCREECH LOUDER “will you listen to me??” SCREECH AND HOWL “come on, dude…sit here, and look at me” HOWL SCREECH BYEEEEEE until we ended up huffing and puffing in opposite directions to calm down.  There wasn’t, however, any SIB…and the anxiety that TGG (code name Kylo Ren…seems apropos, no?) causes him is being managed positively.

When we both came down from the argh moment we were having, and it was not easy because one party was dealing with worry and urgency while the other was sorting through anxiety and stubbornness, I explained that I wanted to help, and asked if he trusted me.  We called Dada and off we went.  A promise of a trip to the grocery store didn’t hurt, let me tell you…

We are home today, and he is happier than he was yesterday.  I know his ear still bothers him (I don’t know WHY this child has so much wax in his ears, or why this particular ear got infected,) but he knows the antibiotic will help.  That is enough for him.  He insisted on doing his elliptical (to the tune of The Sound of Music, a switch from Fiddler on the Roof…maybe because it’s Passover?  He wants to give Tevye a break?,) and he has been in a nice mood all day.  We worked on vocabulary, and we did some chores.  I’m sure we’ll work on a pending project after lunch…

There you have it: the kid is gaining weight because of the med, the parents feel guilty, I’ve learned not to try to move the immovable wall that is my son…

We’ll see about the med reduction.  Yesterday’s medical semi-crisis was a lot more manageable than I would have expected before we went back to the med.  I am sure that, stubbornness and anxiety notwithstanding, J can manage himself better, but it’s a subject for the doctor to ponder with us…

 

Growing pains…they’re called that for a reason

There was a time, as recently as 18 months ago, when J and TGG were close.  Not as close as they were when they were children, of course, but close.  J looked up to his brother, and would defend him when he thought some sort of travesty was being committed against him.

TGG wanted, more than anything else, to have a baby brother.  The moment J was born, he became his champion.  As very small children (before J started showing signs of Autism) they were always playing together, and they would -unbelievable as it may sound- laugh in their sleep as if they had the happiest of worlds possible.

This altered here and there as they grew older.  They had different interests, and J’s Autism played a role in how they interacted.  They still were close, though.  If TGG went away for a couple of nights, J would then sleep on top of him when he returned.  If the weather was bad and TGG was out at night, J would start asking for his brother…quite insistently.

They went to the movies together.  They assembled Legos together.  They exercised together.  They went to eat together.  TGG helped J with things, and J protected TGG from his parents’ “sit down; we’re having a talk” moments.

And then, inevitably, TGG took a turn in his own direction and the link broke.

Yes, it was bound to happen.  Yes, people grow up and apart.  Yes, TGG has a right to his own life.  Yes, we understand.  Yes, J should……….

TGG’s timing and execution were not the best, though.  Like many other people who don’t know better, he simply packed his stuff and left.  We know, even if it’s hard to digest, that he was probably sick of playing second banana to J.  This, of course, is what TGG’s impression of his life always was: he was second banana to J.

What TGG hasn’t yet understood, and it might take him a lifetime to realize, is that -absolutely- we have had to do for his brother things we didn’t do for him, BUT…we did our best to give TGG all that he wanted and needed.  TGG was, in fact, rather spoiled.

The best Christmas haul?  Always TGG.  Trips away from home FOR FUN?  TGG.  Car, iPod, parties, clothes, toys?  TGG.  He was the one with after-school activities.  He was the one with friends.  He was the one with a bike.  He got a guitar, a keyboard.  He got swimming lessons.  He was a Boy Scout.  He was in theater.  He played soccer.  He went on sleepovers.  He had sleepovers at home.  We didn’t miss one performance, one event, one ceremony.  When he graduated from high school, TGG got a fantastic lunch at a ridiculously expensive restaurant.  We encouraged him.  We supported him.  We spent absurd amounts of money trying to help him find his way.  If he had asked to go to the NY Film Academy (which we offered, by the way,) we would’ve spent money on that.  He has had more cell phones than I’ve had bras.  He has gone to Broadway shows at Broadway theaters.

We didn’t just give him things, mind you.  We gave him love.  I have never made any bones about TGG being my favorite.  He was my golden child.  He was told day after day he is beautiful, smart, funny, talented, charming, sweet.  He was told how bright his future was, and we encouraged him to pursue whatever he wants.

I made costumes for Halloween, read stories, sang songs, played pretend games, taught him to climb trees, catch frogs.  I built pirate ships, fortresses, castles.  I played video games.  I rocked him to sleep while I hummed.  I was always there when he was sick, or scared, or worried, or needed me.  Dada was the same.  Dada didn’t miss a thing that TGG had going on.  Dada carried him into the ER when he split his knee open.  Dada ran to his aid when he crashed his car.  Dada taught him to ride a bike, swim, change a flat…

We didn’t prefer J over TGG, and TGG was never deprived of anything.

TGG simply has other things he wants, and his way of getting to them is not the most graceful.

He still should have considered his brother’s feelings.  Not because J would have taken this easily either way, but because J wouldn’t feel like TGG abandoned him.

It was months between TGG moving out and TGG coming to visit.  He lived less than half an hour away, and he worked nearby.  J didn’t take this kindly.

It has become a problem since.  Now J sees TGG arrive and he knows that either something is being sent to TGG’s house, or TGG has a problem and needs help.  Or TGG is broke.  Or TGG is bringing his family over.

J’s face always says “why now?”  Last year was a rough year; we’ve enumerated the changes before.  TGG’s sudden return (with news, of course, of another baby on the way) didn’t help J process life any better.  Shortly after TGG’s reappearance, J started having anxiety issues again.

We don’t see TGG often, and we don’t expect to either.  He has made his life, and we are pretty much aware that there is little to no love lost between us and his new family.  We are here for him, and he knows it.  (He knows it so well that he tries to have with us conversations he should be having with his girlfriend, but that is neither here nor there.)

TGG stopped by yesterday, and J was…not happy?  He was annoyed.  TGG came up to him and hugged him hello, and J looked at me over his brother’s shoulder as if to say “WTF?”  No sooner had we come into the house that J turned to TGG and said (quite clearly, and in a tone that seemed to issue a warning) BE GOOD!  He repeated this several times while TGG was here, and he couldn’t wait for TGG to leave.

The rest of the day was iffy.  It was a four-packets-of-bandaids day.  J was anxious, nervous, antsy, irritable.  The one thing he kept asking was if we were happy.  We have noticed this pattern lately: the phone rings, or a message beeps in the iMessage or the cell phone (a whole week with the iPhones and J HATES them,) and J gets anxious.  He makes up put the iPad or the iPhone away (IF we have taken the thing out of the closet for any reason,) and he stared at the iMessage when it’s up on the computer screen.

The only thing we have come up with, while analyzing the situation, is that TGG was perpetually distracted by his iPhone, and that he is the person who messages or calls with any consistency or frequency.  And when TGG visits, J gets upset.

So…

Thoughts?  Suggestions?  Are we horrible people?  Are we bad parents?  Is J just not into his brother anymore?  No matter what we do to give this a positive spin, J cannot even stand hearing us have a conversation about TGG…

Feel free to chime in.