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…

A little up and a little down never killed anyone…

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

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

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

Well…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And away we go…

No holes in the walls…

J went back for a follow-up visit with the psych on Friday.  This was the new psych.  His previous doctor (who had been treating him for nearly six years) has shifted his practice to serve an underserved population in a remote part of the state, and we were reassigned to a psych who has a specialized practice more geared towards J’s needs.

We were hesitant.  Change is never worry-free.  J asked for his regular doctor several times, and I did my best to help him understand that we were seeing a new doctor in the same office.  It wasn’t the most stress-free ride in a taxi we’ve ever taken.

In the end we were fine.  J was mildly confused at first, and then it dawned on him that we were seeing someone new.  By the end of the appointment, he was leaning back contentedly on his chair, sighing happily and smiling from ear to ear.

We explained to the doctor that J’s obsessions are still there, only less so; we said that we think the med is working, but we have our son rather than some medicated puppet in our hands.  We told her we are glad that we can now negotiate, talk, soothe, reason better than we were able to do way back in early November.

We know she read his file.  She had to so that she would understand the needs of this young man she was meeting for the second time (the first having been a cursory introduction during our last visit to his previous doctor,) and that she knows where we’re coming from.  These visits are as much for J as they are for us.  We often find ourselves a little lost at sea, and we need to know how best to navigate.

The band-aids were discussed: we’re back to after-bath and before-bed bandaids.  The fact that J is sometimes totally into hanging out with us, and sometimes not was discussed also.  The fact that we get tired and frustrated figured into our discussion.  The fact that we can get scared and want to help J as much as we can was also mentioned.  We explained that there are certain limitations as to what is out there, on offer, for him.  We explained that we try to fill the gaps as best we can.

She asked about the SIB, and we were honest.  It’s there.  It’s not entirely gone.  It’s much, much, MUCH more controlled than it was.  We have come to understand and accept that there is a compulsion for it, but that J is doing his best to be kind to himself.  We only see an escalation in proportion to the level of frustration he is feeling.  He accepts that we have to make sure he’s OK, and that he has not hurt himself.  He accepts that we are working to help and not just to hinder.

“Do you have any holes in the walls?”  No.  “Is hitting his head all he does?”  Yes.  She explained that we are very fortunate; J is under control, and he trusts us.  She told us that she has seen, in all her years of practice, people whose physiognomy is changed by the damage they cause through SIB.  She said that we are doing great.  She said that the effort we put in and the work we do shows.

The med, of course, will stay as is for the time being, but we expected that.  We know that J was a certain way, then he progressed, then he had a setback, and now he’s back to making progress.  That doesn’t mean we’re going to have the same J we had before we started slipping back.  This is not the same person…he is, but he isn’t.  Something changes every time we have to readjust.  Experience changes us without nullifying our basic self.

We will move J forward.  We are starting to see more and more of the positive effects of the med, and only the pesky gain weight on the bad side.  But it’s something we can deal with, and work through.  We’ve done it before, and we’ll do it again.

A little over a week to J’s 22nd birthday.  Another milestone.  Another bend in the road.  Another opportunity for growth, maturity…a little madness.

We have no holes in the walls.  J hits his head, but no longer to cause himself pain, and no longer to the point of agony.  He has a pattern.  It is not as fraught with violence as it was.  There is not an undercurrent of anger and frustration that he cannot explain.  He gently taps his head, sometimes it’s actually a caress, and then feels satisfied that he has completed a cycle that, for some reason that eludes us, soothes him.

We stay vigilant.  We stay proactive.  We want to help.  We want to provide him with all the love and support that he needs or wants.

We are doing well.  Sometimes it’s important to hear it from someone else, and we all heard it on Friday.  When you usually get daily feedback from each other, it’s hard to believe that it’s not just encouragement of the “please, don’t give up, or I’ll feel like I have to give up, too!!!” sort.  Sometimes it’s easy to say “we are drowning here!  What are we doing?  Doesn’t it seem like we’re getting nowhere????” because, as parents of an individual with ASD, it’s easy to feel we are isolated, that there is very little understanding of what’s at stake.

We were driving back from the Friday post-appointment outing and our Hamilton CD was playing.  As Leslie Odom, Jr. sang The Room Where It Happens Dada said “you realize that no one wants to be in the room where it happens, right?” as he cast a glance over his shoulder at a broadly smiling J.  Mmmmhmmm, I replied.  It is a testament to our sense of humor that we then immediately launched into a vigorous sing-along to the song.  We often wonder if Lin-Manuel Miranda knows we are singing this about our inextricable position in our son’s life.  People know this is our life, but they really don’t know what that entails.

No one else was in
The room where it happened
The room where it happened
The room where it happened
No one really knows how the game is played
The art of the trade
How the sausage gets made
We just assume that it happens
But no one else is in
The room where it happens

By the time that we got to the end, we were buoyed, energized, ready for anything…

It’s good to hear that we’re not drowning…we’re actually swimming.  Exhausting it is, but it is still swimming.  J is getting better…that’s all that matters…  Or, as the song ends, CLICK-BOOM!

 

No, Ms. O’Donnell…

So it’s Thanksgiving Day and we made the conscious (and very difficult decision) to give J the whole milligram of med so we can dissipate some of the fog that is interfering with getting through to him.

Trust me, it wasn’t easy.  It wasn’t fun.  It wasn’t done lightly.

Yesterday we had two instances in which we were pretty sure he was having absence seizures, but since these are mostly manifested in children we might be mistaken.  It was as if, briefly, J wasn’t there.  Of course, maybe he is having some other issue; maybe it’s a psychiatric issue.  We just don’t really know.

The holiday, obviously, interferes with some of the things we need to do regarding the matter.  If we have learned anything over the past year it is that the medical community tends to slow down during the end of the year; unless there’s an emergency you won’t get anyone to answer your calls, e-mails, etc.  We see the psych again in three weeks.  Let’s hope there is some sort of -at least- half-formed answer to our question by then.

I don’t deny we are overwhelmed and confused.  Hopeful, of course, in the middle of all that, but wondering how to travel around this bulky bank of very dark clouds in the middle of the road.  The purpose of the med is not to make the problem go away; it is intended to help us find a more sparse accumulation of dark clouds so we can sneak in and figure out what is going on in the middle of the storm.

Still…opting for that second dose of Risperdal was not easy.

Last night, as we lay in bed looking at the ceiling fan turning, we were asking each other what is happening, and why we’re having such trouble getting through to J.  The frequent question (“how can the outside world think we’re completely unaffected by this????”) kept floating around the room.  We always ask ourselves if we just make it look “too easy,” and then we laugh and laugh.

We could try to explain, but some of it is too daunting, and some of it is no one’s business.

And then we have Rosie O’Donnell…

Holy shit, wow…

Ms. O’Donnell’s feud with Donald Trump goes back ten years.  Nasty things have been said, and Mr. Trump has done a lot of the saying.  I am not a fan of Ms. O’Donnell, but I don’t think Mr. Trump’s comments about her have been appropriate.  I am not a fan of Mr. Trump either…not of his TV show, not of his political campaign…not a fan.

Having said that…

Come on, Rosie O’Donnell!  Seriously taking to Twitter to comment on Mr. Trump’s ten year-old son?  Speculating whether he has ASD?  Posting a video?  And then claiming that parents of kids with ASD notice things that others don’t????

That may be true, Ms. O’Donnell.  We see things.  We notice things.  We read signs that others might miss because we live with them, but that doesn’t give us the right to publicly speculate about a child.  Much less, Ms. O’Donnell, does it give us the right to defend ourselves using the “but I’ve seen my child do this” argument.

Shame on you.  Shame on you a million times.

IF Mr. and Mrs. Trump have a child with ASD that is their business, not yours.  IF they are opting to maintain this in the realm of their most private life that is NOT our business, or -for that matter- YOURS.  Each family deals with their personal issues in their own way, and you have absolutely no call to take to your Twitter feed (TWITTER!!!!  One of the many current roots of all evil!) to “out” someone who might/might not be on the Spectrum.

WHAT do you think you’re doing, Ms. O’Donnell?  And why, pray tell, are you using the word “EPIDEMIC” to describe ASD?  It’s NOT catching, lady.  It isn’t some airborne virus we need to protect our children from, and it’s not going to rub off on others if they come near it.  You are, if anything, doing a disservice to people who don’t want to parade their, or their child’s, diagnosis for the world to see, judge, scrutinize, criticize, pity.

You have no more right to discuss this than you have to discuss anyone’s diarrhea.  You have no more right to discuss this than you have to speculate if a woman is pregnant because she looks “heavier,” or a person’s sexual preference because they made a hand gesture.

Stop it.  Not only stop it: APOLOGIZE.  You are focusing public attention on a young man who doesn’t want it or deserve it.  He didn’t ask to be born to those parents, and he certainly didn’t ask to have his parents be notorious for whatever reason they are notorious.  If YOU choose to make your children’s lives public (all in the name of shining a light on whatever it is that you think you’re shining a light on,) that is YOUR prerogative.

Leave Barron Trump alone.  His father?  Fair game.  His mother?  Fair game.  His sisters, brothers?  Fair game.  His in-laws?  Fair game.  They are all adults and know what a public role entails.  If Ivanka Trump wants to fill her Instagram with images of her children, that’s her choice.  If they want to make public statements about the clothes they wear, their plans to run the country, their big game hunting, that is THEIR prerogative.

Barron Trump is a child.  He should be protected from the scrutiny that you have subjected him to for your own petty, ridiculous vindictive nature.  You say your child has ASD.  Discuss THAT child’s situation.  Consider, though, that your child has a right to privacy, and you are violating that seven ways to Sunday by talking about it.  You’ve done the same to a child who is not yours, a child whose privacy is to be protected by his parents’.

You, Ms. O’Donnell, are single-handedly responsible for people sitting around googling Barron Trump autistic, and for -forevermore- there being THAT coming up when someone looks up his name.  He’s now not the President-elect’s son…he’s now -thanks to your lack of self-restraint- the President-elect’s possibly autistic son.

I’ll tell you one little thing.  People say, referring to me, “she has two kids…she has an autistic son.”  You know what?  My son has ASD, lady, but he is also my handsome son, my sweet son, my difficult son, my funny son, my music-loving son, my helps-around-the-house son, my loves-movies son, my giggly son, my tall son, my brave son…  You have labeled a child…

You, Ms. O’Donnell, are now firmly planted in my list of Assholes.  You’ve just bullied a little kid…

Shame on you!

 

What if we’re missing something?

The now seemingly-constant search for what is bothering J badly enough to cause all the SIB continues.  I have read more scholarly articles than my intellectual capacity can handle.  (Yes, I can feel my IQ dropping with each baffling moment.)

The issue with the teeth has been more-or-less figured out.  The concerns about a possible fracture or sprain in his hand are cleared.  His ears continue to be big producers of wax, but I seriously doubt (though, of course, I am not a physician so I might be wrong) that THIS is the bone of contention.  He rubs his feet a lot, but he has stopped screaming because he gets cramps in them…is that it?  Doubt it…

My “spidey senses” are pointing in other directions.  Don’t ask why…I’m just going through a process of elimination here.

Is it his digestive system?  Is he having trouble with something he’s not digesting right?  Is he having acid reflux and we don’t know it?  Enquiring minds desperately want to know.

How do I go about this?  Since I know he doesn’t have a cold, and J is very good about letting me know when he is congested, has a runny nose, or feels uncomfortable in that particular area, I’m pretty sure that the problem has to be somewhere else.

The question is…where?  And HOW do I get to the bottom of this?  My first step will be to listen to his gut.  I seriously doubt that gas will be the root of the problem, but gas can tell you a lot about a person’s digestive process.  I know J, as a general rule, isn’t constipated, but -because he is an adult and I have to respect his privacy- I have not been delving in his bathroom habits.  I intend to, as I did when he was much younger and fully dependent on my intervention to complete his bathroom routine, have to get more up-close-and-personal than any parent wants to be with his now-adult poop.

I know he’s had hemorrhoids in the past, but I don’t think this is THAT.  I think he might be in some sort of digestive distress that causes cramps and pain, and he doesn’t want to discuss it (because it’s embarrassing) and it’s causing him grief.  Maybe it’s as simple as a newfound intolerance for something he used to digest quite easily.  While J has not really been exercising as much as he did when he had TGG to go to the gym with him, his diet hasn’t bulked up enough to justify some of his weight gain.  And his belly looks bigger…so there might be digestive question marks in there somewhere.

So…looking at poop, doing a food diary for a week, and figuring out where the problem is…or isn’t.

I know you didn’t NEED or WANT to know that J might be having digestive/poop issues, but Dada is the only other being who won’t discuss this in medical terms that might alarm me.  Heartfelt apologies for the less than discreet subject matter, but poop is important…we all generate it, and there are those of us who sometimes have issues with it that end up interfering with other aspects of our lives.

There you go…food diary (has been started,) and poop patrol.  Anyone who tries to tell me that my life is not interesting, varied, and fun is in for a surprise…

I am supposing that I am in for some surprises, too.

Off I go…

Enough was too much…

A meltdown a day I can deal with; a tantrum for the sake of a tantrum just because he can…well, that’s another story.

Mind you, my friends, I know the difference.  A meltdown has, at its core, a level of frustration that moves J to behave in a manner that will get him attention for something he cannot express is wrong.  A tantrum comes with a sly smile and says “dance, monkey!  Dance!”

Oh, we were patient throughout.  We bathed him as he beat the crap out of himself, and smiled.  We took deep breaths as we saw his hand get redder, and we tried to divert him.  He was relentless.  He was enjoying the power he was exercising.

And then I calmly sat him down.  I showed him how red his hand was, and I told him that there would be NO PIZZA FRIDAY, and NO FIVE GUYS SATURDAY.  He had not been melting down; he was being a brat.  I then informed him (before ten P.M….egads, Brain!) that it was bedtime.

SORRY!

Bedtime.

PIZZA.

I tap the iPad screen and the Proloquo says: NO PIZZA FRIDAY.

FIVE GUYS.

I go back to the iPad: NO FIVE GUYS FRIDAY.

SORRY!  I LOVE YOU.

Oh, we love you, too.  Bedtime.

SORRY!

Get your story, pack your things, and up we go to bed.

STORY?

Yes.

SORRY!

OK, bedtime.

PIZZA.

The iPad talks for me: NO PIZZA FRIDAY.

FIVE GUYS.

Nope, buddy…nothing doing.

SORRY.

I accept your apology.  I won’t give you a reward for it though.

I go back to the iPad and tap buttons in quick succession: J RUDE.  J NO UPSET.  J HIT.  HIT WRONG.  MAMA AND DADA WORRIED.  J GROUNDED.

Stunned silence, and acquiescence.  He gathers his things, and we head upstairs.

When we get to the kitchen he looks at the board where PIZZA, TARGET and TAXI were on display for Friday, and FIVE GUYS was on for Saturday.  I calmly take them down and put them back in the tray.

J looks at me.  SORRY.  I say “I appreciate your apology, but I cannot reward a tantrum just because you think it’s funny.  Upstairs, please.”

Of course, he turned on the charm while we went through the bedtime routine, but I stayed cool and calm, said GOOD NIGHT, and left Dada to read Mouse Soup.  We were all in bed by ten-fifteen, and then J came into the room to check if Dada had clothes out for work.  I told him to leave the closet alone, and march to bed.

At 5:45 this morning he walked into our room and said COFFEE.  We told him to go back to bed.  At 5:52 he repeated his request.  I got out of bed, put a timer on for him to stay in his room, and went back to bed.

How do I know that last night’s incident was a tantrum and not a legitimate meltdown?  Because my son has been trying to be as charming as can be, and he has been SIB-free all morning.

Oh, that might change.  It might be a SIB-ful afternoon, but this is proof that J knows what he’s doing, and he also knows that there is a point when I will no longer go “poor baby!  Do what you will with my nerves.”

I feel empathy for my son.  I really do.  I want him to be happy, and I want to help him in any reasonable way I can.  I also don’t want him to use SIB as a form of entertainment.  “Oh…I’m bored…let’s make the parental units jump, shall we?????”  A legitimate meltdown is something that I can unravel and, perhaps over time, find a way to help him manage better.  I will not accept entertainment-value tantrums.  I will not sink to the level of “reality TV” just because there’s nothing of quality to view at the time.

It is a dreary day.  Rain, clouds, fog, gray…and we’re indoors, and we’re stuck with each other.  We will be entertained, interactive, affectionate and communicative, but I hope we will also manage to have a little peace of mind today.  If he is genuinely upset, we’ll deal with it, but I will not encourage him to manipulate a whole day simply because he can.

Would allowing this help him at all?  I don’t think so…but I might be wrong.  Feel free to chime in!

This facility has been meltdown-free zero days…

I can pretty much predict when the meltdown is coming.  It’s something in the eyes and the way he carries himself.  There is a small hint there.  The days it catches me by surprise it’s because I have been distracted by some other event, task, interruption.  When I am caught unaware that it’s coming it’s worse.  For me, not for him.  It’s always worse for J because he is the one who, in fact, is inflicting harm on himself.  I’m just collateral damage.

The outbursts don’t last long.  They probably sound and look worse than I think they are.  I’m sure that, somewhere in there, there’s some bruising that might come up in an X-ray or a CAT Scan, but outwardly all is well.  J’s skull is hard.  It’s, I’ve been told, a family trait.  That doesn’t stop me from cringing, or being scared.  It doesn’t prevent my worry, or my desire that it will stop and go away.

I admit I’ve cried a bit lately.  I admit I haven’t been sleeping.  I admit it’s hard on me to be here with the sudden onset of SIB.  I admit I have whined about this to Dada.  I confess, and this crushes me, that I’ve wondered if I’m just not good for J.  Maybe I’m not the right person to care for him.  Maybe I’m part of the problem and not the solution.

No, I’m not depressed.  I’m a little down in the mouth right now.  Baffled by the situation and feeling a little powerless, but I’m sure we will find a way to fine-tune, always fine-tune.  Maybe?  It’s possible???  Right???

In other news, I’ve already received the first “hey, have you heard about the Ben Affleck movie about the autistic accountant?” quip.  I am thrilled beyond words that this malarkey is starting all over again…NOT.  “But it brings attention to people with Autism!!!”  No, it doesn’t.  It just gives people like those who make this sort of comment some sort of carte blanche to say stupid stuff like “does J have any special skills like those????  Is he like a supra-genius?”

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Of course, you can tell Hollywood they’re getting it wrong (or they’re going about it in the wrong way) until you’re blue in the face, but nothing will change.  The exceptional circumstances already attached to an ASD diagnosis are apparently insufficient.  Whatever achievements one chalks up through effort, persistence, etc. are nothing to crow about unless you can answer “why, yes, he can play Bach’s Toccata and Fugue in D minor, BWV 565 using mainly spoons a la Mike Wazowski…thanks for asking!”

So that’s where we are.  That’s what we’re doing.  I don’t know how this will evolve, but we are ready to roll up our sleeves -again- and deal with it.  In the absence of day programs with openings, of a reliable respite care provider, of many other things that families in the same situation need and cannot find because resources “out there” are overburdened, we plod on…

Not very gracefully.  Not very efficiently.  Not very enthusiastically.  But we plod on……..