It’s not whether you win or lose. It’s whether you know you’re playing the game…

Yesterday morning things went well.  Throughout the day we were on a fairly even keel.  At dinnertime the nearly-herculean feat of getting J to eat without his wrist brace on was repeated after a successful morning attempt.

The meltdown came three minutes and 42 seconds before bedtime.

I kid you not.  Why would I kid you?  We had the usual “it’s time to take my bath and I’m going to hit myself to show that I still can,” and that was brief, mild and mainly in-name-only.  At a little past ten P.M., when we were getting ready to stand up and help him pack his stuff to migrate upstairs for the night, we heard the loud pounding.

Saturday had been iffy, but I expected that because we ran out the door early and without eating so we could go to the lab for J’s blood work.  He was pretty good.  He was, as is to be expected, anxious, but he cooperated.  The only problem we had is the same problem we ALWAYS have…J doesn’t know how to keep his arm straight.

A side note: what J has received in terms of PT has been minimal.  Rolling a ball, catching a ball, things like that.  If you are a Physical Therapist and feel offended about how trivial I make that sound, please understand that I’m not saying your profession didn’t do enough; what I am saying is that you are all overworked, over-booked, under-funded, and pressed for time.  When J did get Physical Therapy it was for half an hour a week, and I’m pretty convinced that 25 minutes of that half hour were expended in helping him relax because, sadly, my son doesn’t like to lay flat on his back and anything that involves that is prologue to grappling with the Gorgon.

I work on that at home when we’re exercising.  J does jumping jacks with his arms bent at the elbows.  He also doesn’t know how to stand up with his knees straight…not locked, straight.  And he leans to the left.  Not politically…he just leans to the left.  His shoes are more worn on the left side of the left shoe than anywhere else.

So getting blood is not always easy.  The lab technician who worked with him on Saturday is very good (she’s drawn my blood before,) and she was very kind and patient with J.  Hoping that she’d be there working on a cold and dreary November morning was why I decided we should drive a little farther.

The lab results came back that evening, and only one number worries us because (yes, we googled it) the number could reflect hypothyroidism or that he’s had seizures.  We are hoping that the doctor will get in touch with us before the Thanksgiving holiday, but we doubt it.  I called a cousin who is a very experienced doctor (oh, shut up…you would have, too, if you had one,) and he said that the number could reflect both things, but that we won’t know more until they do either a CAT Scan or an MRI.  He said to talk to our doctor, and to let him know what he says.  When it comes to bedside manner, and being the voice of reason, our cousin is amazing; he is trustworthy, kind, smart, no-nonsense, and will be professional throughout the medical questions portion of the call…then we’ll go back to the normal behavior of people who talk about baseball, family, weather, etc.

So our concerns were addressed with sufficient clarity to prevent us from hyperventilating all weekend.  We remained concerned but calm, and we have a list of questions for the e-mail Dada is sending the doctor today.  We are, however, in what we call “productive worrying.”  Panic lasted a very short time because J doesn’t need panic; J needs productive, proactive behavior.

Yesterday the weather wasn’t as nice as we wished, and J wanted to stay home.  He was good, as I said, eating without his wrist brace.  He was good with cleaning his room and changing his sheets.  He was OK during his bath-time, and pleasant all afternoon.  In the evening he engaged in some sock sorting and folding, and then he played hoops pitching them into the laundry basket placed across the room.

It was those 3 minutes and 42 seconds before bedtime when he completely forgot, or chose to forgo, asking for help with his bandaids.  And he lost his patience very quickly when we didn’t immediately make them materialize out of thin air.

My last words to him last night were “we’re going to work on patience and asking for help tomorrow, and I love you.”

This morning he woke up happy.  I saw his fairy lights on, and went into his room to find him sitting with a pleasant smile on his face.  I asked him if he wanted bandaids, and he said he did.  So we did the bandaids early, and -after removing his brace- I said “if you need to do something to soothe any anxiety, just try to not overdo it.”  He helped me unpack each strip, and then handed them in the order he wants them applied.  Right before finishing the whole ritual I said “last call…now’s the time!”  He looked at me, and then he hit his head…not hard.  He actually seemed to be counting how many times he was tapping it, and it wasn’t the uncontrolled, vicious hitting of a few days ago…it was more like he needs to do this to calm himself.  Little by little (and this is a matter of seconds, not minutes,) he decreased the force he was using, and it ended up being touching his hand to the spot he usually hits.

After that he sat happily in his bedroom until 9:30, and then he calmly got his snacks from the garage, grabbed his yogurt for breakfast and sat in the TV room watching Chip n Dale Rescue Rangers…

And then came the screech…

Or the screeching wail…

I was nearby, thank goodness, because if I’d had to navigate stairs I might have fallen and broken a hip.

You hear a screech and you assume “shit, he’s hurt!”  So you run.  And bounce.  And push things out of the way.

I opened the door to find him sitting placidly on the couch, and smiling.  Nothing.  Nothing was wrong. I asked.  I checked.  I patted him like Sarah Connor pats John Connor to make sure he’s fine when she is rescued from the mental hospital.  I asked with the Proloquo.

He’s HAPPY!

And I feel like this:

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Happy Monday, everyone…sigh…

 

 

Gimme an S! Gimme an I! Gimme a B! What does it spell???? Crappy weekend, that’s what…

Many years ago, I don’t remember when or where, I read an essay about the early weeks of raising a baby.  The author, whose name I don’t recall, mentioned that at some point he/she started crying whenever he/she sang Old Man River and got to the Ah, gits weary
An’ sick of tryin’ part while trying to get baby to sleep…

At the time I thought this was very funny, but I didn’t have kids yet and I didn’t realize how true it can be.  It has long been a running joke, when the kids were sick or restless, that I’d sing that line and Dada would snicker.  We now sing that line together, and it doesn’t sound quite as amusing as it used to a few years ago.

We are going to the psychiatrist this afternoon.  We have reached a point where we are baffled, confused, totally stumped, and pretty much sick and tired of the status quo.  It’s not the lack of sleep (although that doesn’t help,) or the mental exhaustion (which has led us to have mostly incomplete-sentence conversations during which we sound like Jeff Spicoli without the pot…or the pizza.)  We do a lot of “yeah…I know…right?  That’s…yeah…you know…what I’m saying is…  Totally…(sound of explosion made with mouth while hands signal head exploding.)”

It’s not just the Cheech and Chong quality of the conversations that worries us.  We are worried about how obtuse this situation is, and how it’s affecting J.  When you have to fashion an “ice-pack holding” beanie, you know that SIB has become an issue.  When J wears it with panache, you basically know you’re f*cked.

At this point we are pretty sure that there is an underlying cause that WE cannot get at because WE are not healthcare professionals.  We read scholarly papers, and we can say “I see this, this, this, and that,” but it is not OUR place to diagnose him with anything, or to devise a plan without consulting someone who can tell us if he needs something more.  We are not fans of medicating J, especially after working hard to get him off his meds last year, but if he NEEDS medication because there is something that needs dealing with and that’s the only way to clear the functional emotional cobwebs, we do what has to be done.

It was a grueling weekend.  J brooded a lot.  J was stormy…not in a “holy smokes!  We’re all gonna DIE!!!!” sort of way, but in a low rumble of thunder and ominous clouds that make you wonder if you should go out or stay in.  We stayed in…

One of the most difficult sides of this situation is that everyone knows individuals with Autism are prone to SIB.  J has a history, and we accept that not every incident of SIB is the end-all be-all, but…when we tell the doctor that this has been consistent and escalating over the past few weeks, and that there are certain compulsive behaviors that are increasing…

When you wake up at six a.m. on a Sunday because you hear pounding, you go into your son’s room and he’s hitting himself and visibly shaking..that’s not normal.  Or, let me say it another way, no one should expect you to take it as normal.  A while back I spoke to the doctor about my concerns regarding the possibility of J having bipolar disorder like my mother.  He told me we’d have to wait and see.  I asked what for…he didn’t really have an answer.

I don’t expect a blood test to tell me if J’s mental health has become more fragile.  I am not stupid.  I know the whole process is more convoluted than that, and that a great deal is observation and piecing the puzzle together.  What bothers us, and baffles us in those Cheech and Chong-like but completely cannabis-free moments, is that no one seems to trust our judgment.  When we call or e-mail and say “hey, this is getting out of hand,” we shouldn’t simply be dismissed with a “we’ll have to wait and see.”

What has to happen?  The cops have to be called?  Property has to be damaged?  Someone has to get hurt…worse than J has hurt himself?  Someone has to die?  Someone has to be arrested?  I don’t understand what the DefCon thing is for this…

I know that we can deal with this, but not in this way.  Does that make sense?  We have had to take a long hard look at a lot of factors: our age, our physical condition, the stress level we live under.  And, when it comes to stress, that includes J; J is under A LOT of stress, and since we don’t know the source, we cannot really deal with its cause.

Yesterday was hard.  Yesterday there was crying, screaming into pillows, sobbing uncontrollably when J wasn’t around and couldn’t hear me.  Yesterday was long and grueling, and scary.  And it wasn’t made any easier by Dada’s job.  Just as we were heading out to take J on a short drive to be outside the house for a while, work called and that was canceled.

And by the end of the day we realized that we have bought into the illusion that the income makes up for the rest.  It doesn’t.  The benefits are awesome and J is covered for all his dental and medical stuff (except psychiatric services because the State of West Virginia doesn’t cover that for people with Autism, and thank you for that.)  But…we don’t really enjoy any of the other stuff that the salary allows us to have.  We are not really taking care of each other as we should.  We are putting patches here and there, but the raft is still full of holes.

Our marriage is good.  We love each other.  We want to grow old(er) together, but we know something HAS to give, and we have found WHAT it is…we came up with a plan.  It’s not a perfect plan, but it puts J and us as a family front and center.

And today we go to the psychiatrist, and we see if we can figure out the hard part…

 

A feeling of complete and utter failure…

I have read every single paper I’ve been able to find online about SIB in adults on the Spectrum.  I’ve tried to apply everything they say to do and not do.  I have tried to be as zen-like about this as I can possibly be.

I’ve failed.

I am feeling horribly frayed around the edges.  I no longer know what it’s like to keep my cool.  The more I think we’ve progressed, the harder it is to face the fact that here comes another massive meltdown that I cannot explain, followed by a wide-smile tantrum that I cannot sit through without feeling a terrible itch cover my body.

I have considered running away.

I then remember that Dada is at work, and I can’t leave the kid alone.  Then I get angry because the kid is 21, and I shouldn’t still be doing this.  Then I say to myself that it’s not his fault.  Then I get angry with Mother Nature.  Then I cry because I am obviously stupid and cannot handle this like a normal, intelligent, proper parent would.

Oh, don’t worry about me.  You know I’ll start floating nicely and eventually I’ll paddle, but right now I’m just not feeling it.

I’ve caught myself muttering some pretty mean things when I’m irritated by yet another cycle of repeating the same simple instructions for the umpteenth time in a day.  I don’t mean any of them, but I say them nonetheless.  I cannot be the pretty, put-together, glossy poster parent of an adult with ASD.  Or what people expect that to be…  In truth we are all a small percentage cantankerous, monstrous crank, and we push that feeling down so we can do what we do without becoming horribly bitter.  But the bile has to come up once in a while, and we might nitpick on things that have absolutely nothing to do with our children because it’s better than actually letting the cantankerous, monstrous crank loose on those we love.  I, for example, would like to drop a piano on the new Daisy Duck and Minnie Mouse….and updated Dora the Explorer.  And whatever the new Strawberry Shortcake and her friends are supposed to be representing…piano on them, too.  And Bratz dolls.  In fact, any doll that is just weird…like those vampire-like, ghoul-like Bratz-like dolls.  What is THAT?

No, I don’t walk around like inebriated Elaine Stritch pointing at these toys and muttering vile insults in the toy aisle at Target…

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but I’m doing it inside my head.  It gets the aggressions out.

There are days when I feel like Michael Palin’s character as the end of A Fish Called Wanda approaches.  I’m pretty sure I look like it, too.

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Today I just feel like Bette Davis in the earlier scenes of Now, Voyager…but I think she was under her mother’s thumb more than I am under J’s.  I would factor in, though, that I’ve needed a haircut for a while and haven’t had the time, and my skin could do with some kindness…

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but the deer-in-the-headlights look is there.

I am not expecting to suddenly have the situation turn around so that I’m Julie Andrews spinning in circles on top of the mountain singing that the hills are alive, but I will settle gladly for a little Auntie Mame‘s misdirected optimism.

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All I really wanted this morning was no hitting.  I wanted to pace the day so J would be entertained, stimulated, happy, occupied with things that would keep his hand from pounding on him.

Since I can no longer have that…what do I do?  I can’t call Ghostbusters.  I can’t explain my plight to anyone who will understand (at least no one who I actually know, and who will empathize and say “there, there…we’ve all been there.”)  I can’t yell at every telemarketer, or drop pianos on anything.

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I can only hope that the end of the day will find me (US) sane and happy and whole.  I can only hope that whatever dark cloud is marring J’s usually-partly cloudy disposition will pass, or rain already…all the thunder and lightning and no rain is ominous and frustrating.

So there we are on Friday: over the meltdown for today (hopefully,) hesitating about having the sitters come over tomorrow (what if he does THAT when they’re here????,) wondering what could be so overwhelming that it’s overwhelming him so much, and trying to keep it (whatever “it” is) together and failing.

I’m frayed.  I’m frayed not like a new pair of jeans you paid too much money for, but the holes are strategically placed.  I am frayed like a pair of beloved jeans that suddenly go soft in a spot and then softer and then your buttcheek is exposed and you realize there’s a pimple there, and you’re wearing your grungy underwear that you save for when you don’t care, but this time you’re at the grocery store and you run into people you know…and they recognize you from behind…

Yeah…

That’s how I’m feeling…

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……..

 

It’s definitely no longer summer…

On Friday I managed to convince J to wear long pants.  It was colder and rainier than it had been in a while, and he was game for it because they were his “movie theater pants.”

Yes, J has a pair of long pants that are purely and exclusively for movie-theater outings.  Like Sheldon Cooper’s bus pants, these signal a specific outing, and will be accepted as replacements for shorts.  A definite turn away from long cargo pants has been duly noted; the fact that J pushed them so far to the left in a barely-visible corner of his closet (six pairs of pants look like one!) is a clear indication that “school pants” are no longer a thing for him.

Going to the movies, in J’s mind, is either prefaced or followed by a trip to Old Navy.  We are easily recognizable there now.  J goes straight for the t-shirts and lounge pants.  I look for viable long-pant alternatives.   The pair he currently accepts as movie-theater wear is similar to a jogging pant, but it has a mock-tweed texture.  We have found a pair of actual jogging pants that he doesn’t yet want to wear out of the house, and a pair of sweatpants that he has already broken in.  With colder weather fast approaching, we will need to add some alacrity to this quest.

I took J to watch Miss Peregrine’s Home for Peculiar Children, and I fully expected him to want to leave halfway.  J sat happily watching the movie.  It is at moments like that one when I remember that he loves The Nightmare Before Christmas, and I make note of getting him his own copies of the Harry Potter movies…the copies we had were TGG’s and, of course, he has them.

We continue with the daily meltdown.  It is, as I mentioned, brief, but it is there nonetheless.  The cycle is usually the same, and now I am even more vigilant about the possible onset.  We have tried explaining to J that he has to talk to us, but I am figuring that this is a self-stimulation issue and I am trying to be patient while offering alternatives.  Churning butter has come to mind…we lack the equipment.

There is, of course, very little we can do to get J to understand the more complex feelings that come attached to his hitting himself.  He knows it’s wrong, but he seems incapable of reasoning that he should stop.  It lasts very briefly, as I said, but I make sure to explain that it’s harmful, it’s scary, and there’s no need for it.  It seems to be somehow related to his desire for brief pockets of concentrated attention: hugs, kisses, I love yous that are followed by a happy but firm BYE.  He is satisfied with the results of his tantrum, and we are emotionally exhausted.

That’s where we are in our adaptation to life as it is now.  We might be changing venues again soon…we are pondering another move if Dada can find employment elsewhere.  It is not that his job is in danger so much as his job is too stressful and he’s wondering if it’s worth the hassle.  At our age, with our built-in stress, we need to exert some control over these decisions before life forces them on us.

Does that make sense?

Another start to another week in a colder frame of weather…on we plod with as much enthusiasm as the fog will allow…

The problem with ointment? That one single, solitary fly…

It has become part of the morning routine: a brief, inexplicable tantrum.

By now I should be immune to the stuff, but it is more unnerving because it had stopped completely.  So the past few mornings, when J turns into an asshole for no good reason, I am left sputtering and breathing so deeply I get dizzy.

This too shall pass, I’m sure.  And come around again, of course.  Only to pass one more time, and so on and so forth ad nauseam.

Is it like this for everyone else out there?  Or is this just in the realm of those who don’t have services available to them?  The tension headaches are a lulu.

So we now have expanded our conversations with the Proloquo2Go, and that helps.  I ask J to “talk” to me, and he realizes that he’s done something he shouldn’t have.  We then go into GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU mode.  I tell him HIT WRONG TALK GOOD and we go back to the same GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU loop until he finally gets that he should say SORRY.

We are learning something new about how hard this is every single day.  We adjust accordingly.  We fine-tune.  We repeat, and repeat, and repeat.  We go over things many times, and we try to clarify the message so that it becomes more accessible to J over time.

It would help if opportunities for activities were available.  We have made a habit of going to the movies just the two of us, and he likes that.  Tomorrow we might hit Miss Peregrine’s Home for Peculiar Children, but I’m not sure J will sit happily through that.  The book is awesome, and I have faith in Tim Burton’s ability to adapt the material, but I don’t know if J will like it.  Perhaps a bigger bucket of popcorn and his iPad with the headphones will do the trick, but it’s a 2-plus hour movie and that’s a lot of popcorn…

Yesterday J got fixated on the notion of a birthday.  We made cupcakes.  Most of them went to work with Dada this morning.  J was satisfied with the ones he got to keep.  He has only had one so that might be a treat later, or he might just be over the whole thing.

We’ll see.  We’ve passed the tantrum point for today.  I am exhausted and frustrated, but he seems to have settled down nicely.  The trick is to see how long he cycles through this particular routine, and to try to make it less overwhelming for everyone here.

We are, as usual, working on it.