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.





It’s almost like that last scene in Raiders here…

We are pretty sure that the boxes are humming at us.  Not just ONE box…all of them.  Either that, or we have this ringing in our ears that is interfering with everything.  It comes from the house slowly being disassembled, packed, and lined up for the movers to take away.

We are currently at the stage where we pack, and discover we’ve left a mess in our wake.  From that we gather those things that are still viable for packing, and then we are left with all sorts of flotsam and jetsam that is, basically, of the “what IS this?  Why do we HAVE this?  Oh, this was from THIS, and we don’t have that anymore!” variety.

The one good thing about moving is that you discover that there are things you no longer need, want, care about, have a use for, and you send them along to a more productive life elsewhere, or you discard those things that cannot possibly be of any use because they are broken, spent, outdated…

The moving company we decided to go with came today for the estimate.  (Long story short, the other company dithered to the degree where the dates got really murky, and we cannot do murky.)  The bulk of our move is books, and J’s stuff.  He has calmly and happily allowed me to cull some of his belongings to pass on to his nephews and nieces, and that is lightening the load somewhat, but there remains the question (not a trivial one either) of how to pack up all the train tracks, the Legos that go in his village, and all the “vegetation” that grows in the wilderness bordering the village.  The balls from the ball pit have been taken care of, and his craft closet is almost entirely packed.  There remain the boxes of extra Lego pieces sorted by color, and -because Wednesdays are Lego Days – those will remain as they are until the day before the movers come.

J’s room will be the last thing packed and loaded on the truck, and he is seeing the house slowly being disassembled but feels safe in his cocoon because we remind him every single day that he will “lose” his stuff last, and “get it back” first.

All the administrative layers of complexity involved in this relocation are being addressed in stages.  The utilities will be last, of course, because the house is still being occupied by the seller.  The first appointment with a new psychiatrist has been scheduled, and I’ve had a conversation with the court regarding transferring guardianship from one state to another.

And therein is the sticking point, my friends…

I have read the laws regarding guardianship in our state, and I’ve contacted the court.  I’ve contacted the court in our new location, and they’ve told me how the process works.  The problem is that our current state doesn’t have provisions for transferring the guardianship even though there is reciprocity between this state and the one we’re moving to…you read right: the law say nothing about transferring guardianship between states.  There are no forms, no lists, no contacts, no FAQ, nothing.  Tomorrow I am calling the court in our soon-to-be new state and asking them about the viability of starting the process all over again from scratch over there.

SO…word to the wise, if you’re planning on relocating across state lines, don’t just take “reciprocity” at face value.  Dig a little deeper, and try to figure out how the issue works in one state and another.  For all intents and purposes, our current state seems to operate under the premise that a family who has guardianship of a disabled adult will never want to leave here…


That’s the scoop for this evening.  Now I’m off to make tomorrow’s to-do list, fill out some paper for the new psych, and ponder the alternatives we have for dealing with this guardianship transfer issue…


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 man is an island, but some are archipelagos…

The morning started with three changes of bandaids in quick succession.  I managed to find a moment to reorder some of our more popular and in-demand models from MFASCO.  I wonder if they think I run a small clinic with very specific wounds being treated.

J was very happy last night.  He was giggly, ticklish, cheerful…apparently that dissolved while he was sleeping.  He woke up stormy, brooding, and easily irritated by the slightly-off crease on the bandaid that sat on top of another bandaid at an infinitesimally-skewed angle.

He has since calmed down.  I am assuming the third time’s the charm, and he settled in but his demeanor didn’t change much.

The med is here, and we will wait until evening (when Dada is home and I have another pair of eyes, ears, hands and legs to help with response) to give him the first dose.  The doctor said we can start with .5mg, but we can also go up to a whole milligram if necessary.  I’m hoping the one pill a day will do the trick.

Right now I feel like I’m dealing with a compartmentalized version of J.  In one compartment I have the J that suddenly seems completely helpless when it comes to tasks he used to complete independently.  In another compartment I have the J that wants things just-so, and will fly off the handle if I fall short of that.  Yet another pocket is holding the J that doesn’t really want me around, but next to it is the one that follows me around the house and asks for hugs.  Another pocket: the happy guy who wants me to play with him.  Another pocket still: the guy who doesn’t want my help, and is impatient if I offer it.  So many pockets…

The questions that tick through our minds at rather high speed: is it his brain?  Is it a mental health issue?  How do we reduce the stress without becoming the non-denominational interpretation of cloistered nuns?  Will we ever watch another episode of Midsomer Murders without interruption?  What is easier: buying more coffee, or trying to get more sleep?  If there’s something wrong with J’s brain, how do they deal with that?  Oh, my god!  What if there’s something wrong, PHYSICALLY WRONG, with J’s brain?  What’s going to happen to our son?  How do we help?  What if it’s the hitting?  What if the hitting is because of something THAT IS WRONG WITH HIS BRAIN?  They’re going to have to sedate him for a CAT Scan or an MRI…how nervous is he going to be?  Will he be totally freaked out?  Will he trust us when we say it’s the thing that has to be done?  Is he further regressed than we had thought?  Is he scared and doesn’t know how to tell us?  What if he needs to be hospitalized?  How is he going to feel about that?

You might picture us freaking out.  Go ahead.  Picture us.  That’s what we’re doing.  We shouldn’t, maybe, but we do…

Randomly, one of us parents will turn to the other and say, “it’s just us, isn’t it?  We’re it?  He’s got no one else?  WE have no one else?”  The other parent says: yes, it is…yes, we are…no, he doesn’t…no, we don’t.

It is what it is, my friends.  The only thing that matters right now is that we figure out what is causing all this grief for our son.  We only want him to be well.  We want J back.  We know that he’s in there somewhere, but he’s having trouble coming to the surface.  He’s murky and can’t follow the light that says “this way up.”  We need to deal with this so we can deal with everything else.

You don’t mind me telling  you this, do you?  I really hope you don’t because, hand over heart, actual physical humans don’t listen.  Maybe you blanked out while you were reading this, and that’s ok.  Maybe you’re nodding and going “whatever, lady…blah blah blah, life is hard…blah, blah, blah…rallying cry of parenthood.”  At least I can’t see the look on your face, and that goes a long way to make me think you don’t think I’m a whiny person.

I’ve gone off-topic again…meds, yes.  We’re back to meds, and we know (because we did this for a while) that there are tentacles on that octopus.  So I am going to work on daily schedules…better ones than the loosey-goosey ones I haven’t managed to completely refocus yet.  (It’s been a weird few days, thank you.)  I am also going to re-tool our menus. Since weight gain is par for the course with Risperdal, we are going to tighten up that department, too.  All Halloween candy has been ejected from the house, and J has had six Skittles last night, and six Skittles as his dessert.  I am extremely thankful that he accepts this as “a serving” and considers his multi-vitamin part of dessert…because it’s gummy.

We know about muscle cramps, and we have all sorts of things to help in that area.  J likes his massage rollers I got him from Gaiam.  He also has a  vibrating pillow (don’t ask) that he loves, and a fuzzy pillow I found for him at Pier 1.  He has a tent, and his ball pit.  He has all sorts of things he can use to help him, and he has us…we’re here.  We’re not the most talented, skilled, capable people ever, but we try…we try really hard.

As of this evening we will wade, once more, into the waters of medication.  We don’t want him sedated, and we don’t want him altered in any essential way.  This is not about making our lives easier for the sake of not wanting to do the work.  We want J to not feel overwhelmed beyond what is manageable for him.

Not enough hours in the day?  More coffee beans, then…



The litmus test for summer…

J is off to school and, hopefully, he is as happy there as he was when he woke up this morning.  I sent him with a note that reads: SPRAINED THUMB; NOT SERIOUS; WILL FUSS OVER VELCRO…

J has been generally happy.  We haven’t really had a tantrum since we figured out that, yes, his thumb was bothering him, and the doctor addressed it with the wrist stabilizer.  He did get fussy a couple of days ago, but it was easily solved with additional cuddling and attention, and firmness of hand when he attempted to act like a survivor of the Blitz.

The doctor’s response to Dada’s e-mail basically told us what I have been thinking all along: yes, we can increase the med, but we need to seriously consider if we’re willing to go back and forth on this.  Perhaps, he mused, it’s not the right time for a reduced dose, but perhaps we just need to ride it out.  In the long term, J’s body will be affected in different ways by taking the med, just like he will be affected by NOT taking the med, and it’s just a question of which one we want to try first.

The psych expressed his confidence in us as caregivers, and that, my friends, made me realize that we don’t suck as much as I sometimes think we do.  There are times when I am pretty sure that I’ve botched the entire day, and Dada has admitted that he feels at a loss once in a while.  Caring for J is not easy.  Please don’t take this the wrong way, but there are days when I understand our cats better than I do our son…I’m not comparing him to an animal, but he IS inscrutable in ways that I’ve only been able to compare with our resident felines.

One of the most difficult things to get used to when you’re raising an individual in the Spectrum is the progression/regression dance.  You want to think that this next thing they’re learning is going to stick forever, and sometimes it doesn’t.  It’s hard not to take it, initially at least, as a personal failure.  We all want to believe that we will be the next great story on Autism, that we will raise a child who will rise above and move forward, and blaze a trail for everyone.  Even when we pretty much know -because we’ve been doing this for a very long time- that we’re just fighting the same exact battle as everyone else with the same mixed results that are par for the course, we feel deflated and less-than when we realize it…again.

I firmly believe that J just needs time and patience (as much from us as his own) to make it through this latest rough patch.  It’s got to be rough for him.  It’s got to be a constant wondering why he has to be the one who acquiesces and goes along with our attempts to make things better.  I’m sure somewhere in his head he hears his own voice saying “ah, more PECS!  Yes, let’s throw more PECS at this, woman!”  I don’t really want to go all Jerry Maguire on him, and I would hate if he turned around and earnestly said “you had me at PECS!”  I’d rather we do the back and forth thing, especially if we can forgo the SIB when it’s not going so well.


To quote Lewis Carroll’s Jabberwocky: O frabjous day! Callooh! Callay!

The J that left for school happy returned from school happy, and did beautifully while there.  I was so happy about this piece of news that I may have whimpered with relief in front of the bus driver and aide.  I DID kiss J rather noisily and hugged him very tightly while he giggled.  He was very proud of himself for behaving, and I made sure he got all the kudos he deserved and then some.

Since he got home he’s been happy, and asking for his bus song.  I don’t mind repeating it because I can tell that not going to school was wearing on him these past few weeks.  I do this knowing that next year the bus song will be a thing of the past, and we’ll be back to dealing with an anxious person who doesn’t quite know what to do with himself.

And, therefore, I’ve made yet another decision that I dread.  I hate driving.  I don’t have a license.  I am the biggest scaredy-cat on the face of the roads of America.  I’m going to get my driver’s license.

Don’t worry…this is not happening today or tomorrow.  And I’m not driving just for the heck of it.  I’m driving so I can get J places, and with a purpose.  I was not one of those teenage girls who couldn’t wait to get a license, and I’m only getting a license because of J.  I seriously doubt that at the ripe old age of 50 my personal anthem will become The Beach Boys’ Fun, Fun, Fun or Little Old Lady from Pasadena.  I think it isn’t an exaggeration to predict that whatever car I am driving will have the CAREFUL NERVOUS MOTHER DRIVING sign from The Partridge Family fame.

A middle-aged mother’s gotta do…I am not thrilled, but I am bound and determined.  Dada is on board, and petrified.  It’s not that I haven’t driven before, or that I don’t have the skills for it, but I am not as brave as you might expect me to be.  In fact, I’m downright cowardly when it comes to manning a wheel and moving a vehicle.  We are hoping that, with a lot of practice, this will be a thing of the past…or, at least, a smaller issue.  Since I have absolutely no intention to drive on the freeway, drive during rush hour, drive in snow or ice, and very possibly skip the rainy days too, I will (hopefully) be ok.

So…there you have it.  Good day for J.  Good day for everyone.  Monday is in the books…on to Tuesday, then.

Slightly intimidated, but not defeated…

In a nutshell, we might have to go back to more med for J, but right now it’s wait-and-see.  I asked the doctor to let me ride the next four weeks and observe assiduously while taking detailed notes. I am sure, I told him, that we can work through this…

He said he trusts me.  That sort of scares me.  Either I am delusional and he is playing along to keep me calm, or HE is delusional and I am putting my faith in the wrong place.  Judging by how well J behaved today at what I expected to be a disastrous appointment, we might both be on the right track with this issue.

The truth is that I think I’ve been lazy.  Or maybe the word I’m looking for is complacent…I’m not sure at this point.  Maybe I’ve been both.  That’s the one drawback about stability and progress: we tend to rest on our laurels even as we say we’re not doing that.  I might have made a cushier nest of laurels than I originally intended…my bad!

This is the plan right now: we’re doing the TV room in what HGTV designers might call sensory-room feng-shui chic.  That is: the ball pit (of sorts) is going in, and the lighting is getting re-designed, and I’m mounting the TV and re-doing his shelving system.  The weighted blanket is a go.  Surround sound will be in place soon.  The purpose is to give him everything he probably wants (because he loves all these things) and we’ve been too dense to provide him with because (get this) we think he’s “too old” for that stuff.  He isn’t.  Just like he’s not too old for Dora the Explorer, Madeline and Disney Princesses, he’s not too old for a ball pit because I’d want one if I could get away with having it in my room.

His bedroom we will work on together.  Tomorrow (because it’s going to rain) we’re going to re-organize everything.  I am going to put a canopy over his bed, and I think this will go a long way to soothing him because he has always loved hiding in dark walk-in closets when he’s anxious.  If he wants a heavier bedspread, more pillows, we’ll get that squared away this weekend.  Because I know he loves his boxing gloves while still loving the freedom provided by not carrying them around, they are staying in his room, prominently displayed on his bed.  As I’ve done in the past, I’m going to make sure we have any type of wrist support he might think he needs at any given moment.

Yoga is another thing we’re doing.  We are trying anything and everything because J balks at first, but is game for it soon thereafter.  We’re trying it all.  We’re immersing ourselves in not going back on more med if we can help it, and it may be the stupidest, most ridiculously hopeful thing we’ve done in a long time, but we’re committed.

And scared…

We are scared…

Of course we are scared.  We’ve heard the growl and seen the SIB twice in two weeks.  We are, for the first time in five years, actually flummoxed about J’s behavior.  He was, as the doctor said today “SO stable…”

All we can do is plan, and go through a whole trial-and-error thing.  We might crash and burn spectacularly, but we’re not going down without trying to pull the nose up.  We’re trying in every possible, reasonable (ok, there might be some unreasonable tactics in there, but that’s why we’re creative people, right????) way to turn this thing around and put J in his “good” place.  Not necessarily his “happy” place because “happy” can be deceptive, but a good place…one that is conducive to what he needs to do and be.

That’s all I’ve got right now.  Well…and lists…lots of lists and notes.

Onwards, upwards…or something like it…

Don’t let the smell of regression intimidate you…

First it was “pull my sleeve down and cover my hand.”  I said NO and rearranged his shirt so it was resting properly and squarely on his shoulders.

A few hours later, a smiling, happy J came into the living room with a boxing glove in his hand.  He asked me to put it on him.  Same hand that he wanted covered with his sleeve.

I said NO in the same tone used when saying “silly rabbit, Trix are for kids!!!!”  He smiled and, slowly, made his way back to the third floor to put the glove in his room.

I decided the tack I will take is to keep his hands busy because idle hands and all that good stuff…

It’s still eleven days to ESY.  I think he’s bored.  I think he wants attention.  I am confused because he constantly kicks me out of his presence.  I am willing to try anything; whether it’s leaving him alone, checking on him every five minutes, taking walks when he least expects it, doing crafts, just sitting there…  I’ll try it.

I am aware that he is 20 years old.  I understand that he is not operating on the same system as I am.  I understand -especially after seeing Inside Out..go see it…it’s a must- that the little Mindy Kaling in him is probably taking over the control panel.  I’m even ok with his inner Lewis Black putting in an appearance.  I get the whole thing about a new improved, more complex control panel.  I understand that regression is normal.  I understand that unhappiness in small doses can be a good thing.  I understand that he cannot always do what I wish he would do.

Tomorrow we go to the psych for the first time in six months.  I was hoping to wave goodbye to the Risperdal, but now I’m not so sure…  To paraphrase Sheldon Cooper’s thoughts on gravity: Autism, thou art a heartless bitch!

Tomorrow is, as Scarlett O’Hara said, another day…