Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents

Today is the first day of the rest of your life…

Well, it has finally arrived.

It’s May 18th.

First day of no-school forever.

FOREVER!

How ready are we?  What option do we have but to BE ready?

We have done all we can do, and we will take it from here with a grain of salt.  The BUS and BACKPACK PECS are put away.  The new order of things will slowly take root.

J is ready, I think.  He knows what’s up, and maybe he’ll be in denial for a while, but we’ll figure out how to help him adjust.

It isn’t like we haven’t experienced a lot of change over the past five years.  We were a four-boxing glove family.  We were a Rasta hat and scrum cap family.  We were a Risperdal family.  We were a Slinky family.  We’ve reeled in the bells and whistles and are left with “sleep with them” boxing gloves, “wear to bed” Rasta hat and scrum cap.  No Risperdal.  Slinky…well…Slinky’s a “person” to J, and I’m sure he’d quote Lilo and Stitch if we tried to ditch Slinky.  Slinky is part of J’s ohana

We’ve made progress.  Little by little we have reclaimed some semblance of “control,” and we are pretty firmly set on the parts where our lives function very well.  But change is inevitable.  We cannot control change unless we opt for absolute stagnation.  And stagnation is not something we encourage.  School had to end.  J’s teacher wanted to stretch it out a little, but I knew if we fell into that trap we would just be going against all our preparation for the transition.  All that “it’s until the 17th!” and the countdown would have been for nothing, and J would be confused.  So I said no…let’s stick to the plan.  Change is necessary.

Change, however, seldom comes in singles.  Another relocation is in the cards for us.  Health issues that, thankfully, have been discovered very early in the game are on the calendar.  So transition is the name of the game, and change is the card we drew from the pile…

We’re old pros at this, so we’ll do what has to be done.

J left yesterday morning with his THANK YOUS and his little gifts for aides and teachers.  He had a good day except for a brief portion during which Voldemort (the one person who gives him grief) made his life miserable.  It passed.  It was too important a day to let anxiety linger, and the situation was managed.

At 3 PM I sat on my usual spot, and waited for the bus.  The same lady that usually parks in the middle of the road (blocking the bus driver’s view and thus preventing J from walking independently from bus to mother) parked in her usual spot.  Here I was, one last time, trying to reinforce “you can walk without me,” and there she was doing the absolute opposite for her neuro-typical child.  Here’s the kicker: she drives to the school, makes sure he gets in the bus, and then dashes home to wait for him.  He’s five.  I get the concern, but…this was the one last time to reinforce the “walk towards me…I’m here…you’ve got this!”  That I had to navigate around her car and (several times in the past) cars pulling into the neighborhood’s shared driveway nearly hit me is inconsequential.  But I digress…

Change is in the air.  OK…change is cramping our shoulders, making us frown, giving us pause.  We know as we get older this process of perpetual readjustment and fine-tuning will be more difficult, but we understand that the world we live in is one of constant change.  Gone are the days when people were born, grew up and died in the same town.  We are so far from “home” that it never ceases to amaze us.  Oh, the times we’ve stopped and said “HOW did we get HERE???”  And now it seems we’re on the way to doing it all over again.  The only plus-side we’ve come up with so far is that we no longer have to agonize about school district suitability, but services, etc. are still important.

Last week our main concern was today, and now we’ve added several more things to the list.  But J is happy.  J is taking it all in stride.  J will, like water, fall into whatever container we pour him in, and that’s a good thing.  We will choose a good container; we will, as always, make him a priority.

So here is today…a few hours ago it was just tomorrow. And J is happy with the way this particular morning is going.  Dreary, yes, but a good morning nonetheless.  It is raining and it is gloomy, but we are both in our pajamas (don’t judge) and Dada’s off to work.

Our plan today is simple: he’s already  made his breakfast (with less than 45% guidance and assistance from me,) and then we’re going to do our chores, exercise, and learn the fine balance of not getting into each other’s hair on a more permanent basis.  School breaks, in hindsight, look like piece of cake now…but we’ll learn…we’re going to figure this “we’re all grown-ups sharing a home and with very little to intervene with our day-to-day routine thing.”

The rest will fall into place, right?  Eventually?  With a modicum of stress?

As with birthdays (after a certain age or stage in life) today we don’t feel at all different from yesterday.  That might be a good thing.  Maybe it wasn’t meant to be a monumental shift.  Maybe it’s just like going to the optometrist and finding that one lens makes the images crisper…

Yeah…

I think that’s it…

Let’s go with that…and let’s put the “comfort item” snow boots away…

shall we?

Counting down to no-med days…

A quick inventory of the Risperdal bottle, and a cautious reading of its label has confirmed that J’s last dose of med is on Saturday, December the 12th at some time around 9 a.m.  Based on previous experiences, and on extremely intricate calculations that I cannot divulge because they involve very convoluted logic, J will have a crappy Second, Third, Fourth, and possibly Fifth Day of Christmas.  By the time he goes on Holiday Break, his teachers, aides and classmates will have earned a much deserved break from J’s angst and moodiness.  (Memo to me: make the gift cards slightly nicer this year…call it “appreciation” but really mean “atonement.”)

It’s not that I don’t have faith in our ability to navigate this transition.  It’s not that I’m not sure J is pretty much ready for this.  It’s more that I’m always wary of the sudden (yet gradual) shift in the brain’s chemistry when an outside element (that has been there in greater and then sporadically reduced quantities) over the course of nearly six years.  There’s always that iffy moment when J’s anxiety peaks because his body is looking for something that is no longer there.  Those three or four days can be grueling for him.

In preparation for this, we are trying to keep things organized, and we are hoping to create a solid routine for J with plenty of opportunities for escape if he is inclined to be on his own and away from us.  Insufficient attention from TGG continues to be a problem, but we cannot do any more about that than we already have done.  Last Wednesday TGG took J to the movies, and J ended up paying for the pleasure of his brother’s company; he bought the movie tickets and the popcorn and soda.  Of course, J was over the moon with joy because his brother was finally paying attention to him, but…

Dada is up to his neck with work.  The project he’s been engaged in since he got hired at the hospital is supposed to be done by the first of the year, but between the regular work each team member has to do and the tasks involved in completing this process, things have not been going as smoothly as they should.  Long days, traveling, stress…it is shaping up to be quite a lulu of a holiday season.

The Thanksgiving break is a few days away, and we’re mostly ready for the holiday.  TGG has to work when the store opens at six, and Dada will forgo the traditional Friday day off to go in to get things done for his project, but that’s something we can deal with.  I will probably engage J on decorating wrapping paper for Christmas.  I am planning on a little forest of Christmas trees (made with paper mache cone shapes and tissue paper) for the living room, and J loves doing those things so we’ll work on that, too.

I am trying to keep things low-key because I have not been feeling well.  It’s nothing serious, but I’ve been less enthused, energetic, and sprightly than usual, and I think I need to take things down a notch until I’m feeling up to my usual.  The Christmas shopping is 85% done (it’s always the little things that jumble me up,) and we have our menus clearly planned for all upcoming holidays.  I’m skipping Christmas cards, and I’m going to focus on making our Christmas a nice quiet one that will be conducive to J adjusting to life after Risperdal.

There WAS life before Risperdal, and parts of it weren’t so nice, but I think its time is up.  Let’s face it, if we compare J to a car, he’s been driving around on fumes of gas rather than a full tank for a while now.  I’m sure that there will be not-so-nice parts to life after Risperdal, but that can be said about everything in life.  My job in all this is to try my best to help J face yet another transition in life.  That I am taking it slowly, calmly, and trying to not overexert myself should not be construed as being unprepared or being cavalier about it…

We are still wearing a ton of bandaids, but we now choose to go out without taking our brace with us.  We have even gone out for excursions without the band-aids. I don’t foresee (especially with the anxiety that overtakes him when the med is reduced) that the band-aids will go the way of the boxing gloves, but I do foresee that J will make entirely personal decisions regarding certain things he carries, wears, clings to, and so on and so forth.

If there is one thing I’ve learned about J it is that he is a lot more malleable than we sometimes give him credit for, and I am glad that he has become increasingly comfortable with being stubborn, and with negotiating.  Does that make sense?  I am glad that my son can now stick to his guns without being aggressive, and I am glad that he can negotiate without feeling defeated.  Whether it’s about band-aids (negotiating longer and longer periods without them,) or a pair of pants that he was adamant about not wearing, or accepting that he either has his two slices of pepperoni and one slice of cheese OR his cookie OR his two squares of chocolate, J has become an easier person to live with over the past four years.

Furthermore, the change effected in his relationship with food over the past two years can only  be categorized as astonishing.  The same kid who would only eat Ramen noodles, mac and cheese and pizza now happily picks the scallions out of the Pad Thai and eats them first.  I have placed a ramekin with broccoli, cauliflower and carrots in front of him, and J has consumed them with a very modest amount of Ranch dressing.  That he loves fish, eats legumes without complaining and drinks apple juice (something that used to cause melodramatic bouts of gagging and near hurling in previous years) is cause for rejoicing.

We’re in good shape.  Anticipation, but the good kind, is in the air…

We’ll see what happens next…….

Little pitchers and all that…

As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt.  The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort.  The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant.  Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.

Unknown-1 UnknownUnknown-2Unknown-4

We’ve had the same bus driver for 80% of the time J’s been attending school here in WV.  By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic.  This is the kid who will buy bandages EVERY SINGLE TIME we go shopping.  I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.

Anyone here have a child in the Spectrum who isn’t comforted by deep pressure?  Compression garments?  Weighted blankets?  Pillows piled on top of his/her body?  Cocooning?  Individuals in the Spectrum feel comforted by these things, and J is no different.  That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.

If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong.  If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism.  I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation.  I KNOW what it can look like to those who don’t know what J is like.

There’s another little quirk of J’s that poses a problem: echolalia.  J will repeat the very last thing you said, and this can be considered leading the witness.  If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response.  “Again?”  will get AGAIN.  If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT.  I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want.  That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT.  I step back, and I wait patiently until he gets that he is the one who has to choose.

Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea.  Some kids will repeat what they hear.  Other kids will embroider and filigree what they hear.  It might not happen, but it also MIGHT happen.  It’s a possibility…

Every single person that works with J is welcome in our home.  We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all.  We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here.  Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”

I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy.  I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully.  What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers.  None of these kids can ask J “hey, dude…are you ok?  Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up.  These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.

Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him.  We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth.  Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him.  I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing.  I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.

I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide.  Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety.  A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner.  Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.

J’s fine.  He’s healthy.  His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled.  I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations.  I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can.  If, for the time being, J thinks the brace is necessary, then the brace is necessary.  It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.

I can live with that.  I accept that it’s the way it is for now and might be for a long, long time…  But ask me, please.  Don’t assume and unwittingly spread that J might be in danger…  Ask me.  That’s what I’m here for…

Mr. Happy-Go-Lucky gets a thumb splint…

J was happy yesterday.  We didn’t have any trouble during the day; we did our chores, went for walks, put together another craft project.  In the evening he went to the gym with TGG, and then we got pizza for dinner.

At nine o’clock he came up from the TV room asking for bandaids.  It was not yet bath-time so I asked him to wait.  And then the tantrum started…  Even though I was just headed for the bathroom to pee, I stopped in my tracks and reminded him that he has to ask for help.  I might as well have asked him to recite Ozymandias.  He would not budge.

Of course, we were deflated, and had to herd him up the stairs to his room so we could address the tantrum and the bandaids.  No sooner did I ask him to take off his wrist sleeve (which we all know is just a piece of a pair of tights) that he started to hit his head.  We immediately pointed to the DON’T HIT sign, but this did little to calm J down.  His reaction was so strong and decisive that I sat next to him and held his hand.  I slowly removed the old bandaids, and up the hand went…bam bam bam against his forehead.

By this time I really had to pee.  I took J’s arm and told him to follow me.  I am not proud to admit that I used the toilet while J stood there, looking away from his poor, weak-bladdered mother.  As long as I hold his hand, he won’t hit…desperate times call for desperate measures, and with his hand tucked between my ribs and my elbow I washed my hands and herded him back to his bedroom.

His hand was swollen.  Not his WHOLE hand, but rather the pad of flesh that sits between the base of the thumb and the wrist.  Swollen.  Like A LOT swollen.  J has big hands, and we’re used to seeing some swelling when he’s been indulging in SIB, but this was way out of the ordinary amount of swelling we have come to accept as “oh, it happens.”

Dash away, dash away, dash away all…”TGG, wrist brace!  Dada, ice pack!  STAT!!!!  Someone bring the iPad from the basement!!!!”  My minions dispersed.  When they arrived back in J’s room I was putting bandaids on, and TGG was giving the swelling a quick look.  “I think it’s either a sprain or dislocation…”  He asked J to make a fist, wiggle his fingers…  With the iPad he told us it hurt, but the pain was tolerable.    Once we had bandaged him up as best we could with what we had, J said HAPPY.  I explained to him that we would go to the Urgent Care this morning.  He tried to hem and haw, and I had to clarify that the pain cannot be addressed with just bandaids.

This morning, after a quick shower, and some complaining, we arrived at the Urgent Care as soon as it opened.  This kid should have Frequent Flyer miles there.  They know him, and -thankfully- they know how to deal with his hesitation.  When the doctor came in and asked to see his hand, J parted with the bandages he was wearing, and allowed him to poke and prod.  After an X-ray, they let me put the bandaids, wrist sleeve, and wrist brace back on…

It’s a sprain.  A bad one.  The doctor says he must’ve jammed his thumb on something.  We told him it was probably his forehead he jammed it on.  “That would do it if he hits at an angle that the thumb is not ready to support.”  The solution?  A thumb splint that immobilizes that thumb and braces his wrist.  “Will he wear it?  It’s bulky!”  I explained that bulk is no issue; after making a habit of carrying four boxing gloves around for a couple of years, bulky is not a problem…it’s a fashion statement.

When the nurse came in with the brace, J smiled as if he’d just been given a beautiful present.  He extended his arm and thumb with enthusiasm bordering on the absurd.  The only thing missing was his saying “for me??????  Oh, you shouldn’t have!!!!!”  The nurse explained that it’s removable, and he’ll have to wear it for three weeks.  Ice will help with the swelling.  Acetaminophen will work for the pain if he has any.  I told the nurse if he enjoys wearing this thing, he will probably make it a part of his daily wardrobe.

I have never seen anyone look so happy about having a body part immobilized.  When we got home, everyone at the property management office and in the maintenance crew asked J what had happened.  He displayed that brace like Michael Phelps displays his Olympic medals on a box of Wheaties.  You’d think he had Iron Man’s arm installed…

Does he fuss over it?  Yes, of course.  There are Velcro straps, and J loves readjusting Velcro straps.  It’s almost like he got his very own, personal, exclusive amusement park ride.  He walks around smiling, his arm extended in front of him…sort of like a modern day, less gloomy The Mummy.

I will take the fussing over Velcro over the hitting himself because he’s hurting and he doesn’t know what to do.  I know that J didn’t just hurt himself.  Of all the things I know J is capable of, intentionally hurting himself to get attention isn’t one of them.  If J is going to hit himself, he wants an audience.  He wants a reaction.  He’s a performer.  My guess is he grabbed something and, because he was already somewhat hurt, he didn’t calculate weight, size and grip correctly and it just got him the wrong way.  I’ve done that before, and it has resulted in needing ice, etc.

Am I worried?  Yes, of course.  We got an e-mail from the psych that I’m still chewing on, but not because it’s a bad, uh-oh, this isn’t good e-mail, but rather because it’s a “think carefully about how you want to do this” e-mail.  So I’ll chew on that, and then I’ll tell you all about it.

That’s it for now.  I’m taking partial-Iron Man to the pool because the weather is fine.

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…

Ok, be A LITTLE intimidated…

Well, that was a meltdown.  A nice one, too.  And it started because we wouldn’t let J wear a sock on his hand.

When, I ask myself, was the last time he wore a sock on his hand????  Five years ago.

My jaw hits the floor.  Dada is pale.  We are, in a word, flabbergasted.

Is this regression?  Is this just him remembering?  Is this the beginning of another downward spiral?

“Well, we need to ask the doctor…,” Dada starts saying, and I have to remind him that tomorrow’s appointment is just J and his mother because there’s a trip to a facility two hours from here that cannot be altered, postponed, cancelled.  It’s just me and the kid who’s been confounding me all day.

I’m genuinely worried as I sit here feeling the acid reflux bubble up.

We have THREE large bandages on the hand, three small ones on the forehead.  The Proloquo has told us HURT and HAPPY.  What?  Are we suddenly John Cougar with the Hurts So Good????  The level of stress is pretty fancy right now…it’s got raisins in it, as Dorothy Parker would say.

The theories we are floating: maybe that little amount of med is not enough med and his body, six months later, has realized it; maybe this is a splinter cell of problems that have been building up; maybe he’s bored/tired/overwhelmed/lonely.

“Well, at least you’ll be at the doctor tomorrow…,” Dada says before I interject “yes, and it’s an outpatient visit to a place where they admit people…”

My shoulders are officially stiff and hurting.  My dinner is burning a hole in my esophagus.  It’s going to be a long night…