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!

 

A setback towards progress…

Blood.  Copious amounts of it.  Red, red, freely flowing blood.  Did I mention the copious amounts?  It wouldn’t really stop either.  That’s what usually happens with superficial wounds.  The more superficial the wound, the later it is at night, the more tired you are, and the more freaked out the person with the wound is…the harder to deal with the mess, the treatment, and the situation.

Let me state, quite unequivocally, that J is fine…ish.  That is: J is fine, but he has an injury, albeit a superficial one, on his hand.  That the injury was caused by the band-aidshe wears in spite of not having any wound is…well…I’ll let you savor and roll that one around of a while.

This is what happened:

Our son, he of the ASD persuasion, has been insisting -as has been amply documented- on wearing band-aids as comfort items for a while now.  At one point his band-aid habit was anywhere from 77 to 104 band-aids a day.  That is a lot of bandage adhesive on skin for no good reason, my friends.  That skin becomes more fragile over time for every human being is a fact; that J has forced his skin into being even more fragile than it should be at his age is a sad reality.

Yes, we need to wean him off the bandages.  We know this.  We are, however, picking our battles at this point, and a reduction in the amount of bandages used per day seems a reasonable step at this time.  We are now at, on a really good day, 22 to 26 bandages a day, but on a bad day we can go up to 36 to 39.

Moisturizing is important.  J is partial to Nivea cream.  Cleanliness is important, too.  Proper circulation is key, but we know that the use of the wrist brace (which J wants nice and super-snug…think Bee Gees pants circa 1977) is an issue.  As I said, conditions are improving but we are still on the “when will this go back to no band-aids until bedtime?” stage of our confusion and desperation.

And that is how we come to last night.  And the blood.  And the copious amounts of blood.  If you’ve never heard Joan Sutherland singing the role of Violetta in Verdi’s La Traviata…specifically Sempre libera you cannot visualize the flow of blood.

No sooner had I removed the band-aids that a quarter-size piece of skin came off.  And then I heard Joan Sutherland…cascading, flowing…why I thought of something that joyous when I saw the blood (lots of it) is beyond me.  Maybe because my dad always used to talk about how her voice flowed so flawlessly, unstoppable, soaring…  J, of course, screamed.  I am sure it hurt when the skin came off (and superficial things tend to hurt like crazy,) and I’m sure the blood freaked him out.

I was in the zone.  Prompt, focused, determined.  Dada was my assistant.  Back and forth to the closet where the first-aid stuff is, and holding down gauze and J as I thought of more things I needed.

How could there be that much blood, you ask yourself.  It was nearly 11 PM.  The room was in half-light (J wanted it that way,) and I couldn’t get J to raise his hand above his heart.  He wanted, of course, to hit himself.  It took about ten minutes, but I finished dressing the wound, and -in another ten minutes- I had convinced J that there was no way he was wearing his wrist brace, and there was no way that I was going to stand for him hitting himself to get the brace back.  Nope.  No way.  Non-negotiable.

I explained that the skin would keep coming off if he didn’t follow my instructions, and then we’d have a serious issue in our hands.  I used the word DOCTOR, and I said that Dada would have to stay home to take him to get checked.  A few deep breaths later (J’s, Dada’s, mine) and we were all calm and ready for Mike Mulligan and His Steam Shovel.  I knew J was feeling better (and calmer) because he asked me to leave the room for story time.  While that was happening in J’s room, I went to check online that I’d done the right thing to address J’s injury.

Once Mike Mulligan was done, I went back in, kissed the walking wounded, and went to bed to read a while.  The thing about having children (a thing people mention but doesn’t quite sink in until you’re in the thick of it) is that you will never sleep like your normal, young, childless self ever again.  Even when they’re adults, you will have the ability to wake up at the slightest sound…I was ready to be vigilant all night of J removing his bandage.  I didn’t want to wake up after a worry-less night to find that he was in distress, his blankets bloody, and his anxiety at an all-time high.  I was awake when J marched into our room, at around midnight, to check Dada’s closet.

The checking of Dada’s closet is a nightly ritual.  Sometimes J is satisfied looking at the open door of the closet and seeing Dada’s clothes laid out for the next day.  Last night, in an attempt to mollify J while I tended to his wound, Dada rushed to his closet and hung the first shirt he could find, coming back to help me almost immediately.  Of course, J had walked out of his room, hand bloodied, and peeked at the door.  He returned, it seemed at the time, satisfied.  By midnight his mind had put two-and-two together: the shirt was not one Dada would wear to work, and there had been no pants hanging there…he came to correct this error.  Out came a nice shirt and a pair of trousers, and off he went to his room.

This morning he was up at five, bandage still on, and telling us to get coffee and Dada to leave for work.  I put a timer on for him, and then returned to check his hand.  The wound is an angry-looking thing, but he allowed me to clean it, and he allowed it to dry before I dressed it again.

I’m sure it will be a day of negotiation, appeasing him, helping him relax, calming his anxiety, but…at least it’s something we can address from the physiological and emotional standpoint.

And we’ve been able to reason with him…with next to no SIB.

I call that progress, no?

Standing on the dock. Hand raised and ready to wave goodbye to the “worst” year ever…

There is, I suppose, a sense of how 2016 has sucked bricks through a cocktail straw.  Bad year.  Bad, bad year.  Yeah, it has been less than stellar, but…has it really been THAT bad?

I guess it’s all a matter of perspective.  I will not say I enjoyed it fully.  I didn’t.  It was a year of setbacks, losses, shocking turns of events.  And that’s not even counting a very nasty presidential campaign.  We got rid of cable.  We don’t watch TV.  That’s how negative the effect on our blood pressure and mood was.  We are content watching Hulu, Netflix, Amazon Prime and Acorn TV.  Not a Kardashian, Jenner, Trump, Clinton, Teen Mom alumna, Lohan, reality show pseudo-celebrity in sight that we don’t want to witness.  We read the news, yes, and we keep up with world events, but we don’t let the rest of the sprinkles, nonpareils, etc. interfere in what we do on a daily basis.

Well, we TRY to ignore the sprinkles and nonpareils, but they sneak in there and you can’t always dodge them.  We get the odd Kardashian selfie, the latest celebrity divorce, the hottest fashion trend that makes no sense.  They never “take,” but they do turn up…

Georg Wilhelm Friedrich Hegel (possibly my least favorite philosopher) is one of the many who has stated that we learn from history that we learn nothing from it.  Add to that list Santayana, Hawking, Churchill, Hume, and many others.  I’m pretty sure Kermit the Frog has said it, too…or Linus from Peanuts.  It is true: we tend to go back to the same mistakes over and over, thinking all along that we will get a different result.  Einstein, in fact, said something about this being the definition of insanity.  Go figure.

So we entered 2016 full of the hope that is fed by hubris.  We were pretty confident that Risperdone was out of our lives, that we had J on an unerring track to unqualified success, that we had figured out the graceful way to segue into the new stage we were all facing at the time.

In quick succession TGG moved out (angrily,) my father passed away, I started having health issues that escalated, J’s school years ended, our grandson was suddenly removed from our family life (very little we could do there,) Dada’s job started going sour, another grandchild is on the way, SIB and anxiety made a triumphant return (like one of those characters in movies that you are pretty sure are DEAD and then rise from the ashes to stun the audience,) and we’re back on the med…and lots of bandaids..and a wrist brace…and that’s just J…we’re anxious, too.

If you look at 2016 from the wider angle of world events, yes, it was kinda bad.  Violence (which has never really been absent, has it, but is now more obvious and more present because we hear about it immediately and it’s dissemination is intended to scare us,) illness (I’ve had dengue fever…a couple of times, actually…but I was worried about Zika…because death,) riots provoked by social and racial discontent, the economy, earthquakes, flooding, fires…

Has 2016 been “that bad?”  I thought to myself of events that I consider terrible: the Johnstown Flood of 1889 and the Galveston Hurricane of 1900.  I read David McCullough’s The Johnstown Flood a few years ago; for the Galveston hurricane I read Erik Larson’s Isaac’s Storm.  With both books I was properly shaken by the impact these events had when they happened.  I decided to look up events that took place in both years.  Galveston and Johnstown were probably the “worst” events recorded at the time…and yet they were not the ONLY bad things that happened.  They were, at the time, not as widely broadcast as everything is now, but they were news items that definitely deserve attention even now because there was something massive to learn from each, and -hopefully- a lot has been learned.

Personally, 2016 was not my favorite year.  A lot of unpleasant, sad, negative, regrettable things have taken place, and we can’t go back and change them.  But the one thing everyone is saying about 2017 is that they hope it will be better.  And it might.  Who knows?  Generally speaking, the world is pretty much deteriorating in terms of quality of life and safety, isn’t it?  You can no longer say “I will go to the mall/the movies/the park and come out without something unpleasant happening.”  The world is full of uncertainties, and we run risks on a daily basis.

That doesn’t mean we shouldn’t start every new endeavor without hope of success.  Our new endeavor is 2017.  We don’t get a do-over for 2016 (neither in the personal or world level,) but we have a whole year ahead of us, and we can work with it as we go along.  Granted: 2016 will have influenced some of it, and its repercussions will be felt.  In its defense, so will 2015’s, and -in some cases- 1999’s, 1977’s, 1968’s.  History keeps happening.  It happens to ALL of us, and it happens to EACH of us, and we are all tangled in it.  It’s going to happen until we are out of the game, and the purpose of the game is to keep playing…even if the bulk of the action is taking place elsewhere on the field, or if we hate the rules because they keep changing.

We are ready.  We don’t know what’s on the other side of 2016.  All we can do is look ahead.  Maybe there will be less med, less SIB, more calm, packing up our stuff and moving, a new job, health, bad weather, loss and love and the whole shebang.  The thing about hope is that we have to feed it, and we have to nurture it.  When things look bleakest, saddest, meanest, angriest, most hopeless…that’s when we take out the good suet to feed that little bluebird of hope and happiness.

J will be fine.  What kind of “fine” that will be is up in the air.  As children we all love balloons filled with helium, don’t we?  We are fascinated by their ability to lift and float, and sometimes get away from us.  When we see them deflate and lose that ability to rise on their own, we are sad and disappointed.  Reality will eventually deflate 2017 a little (after all, we will no longer be outsiders looking in…we’ll be full-time residents!,) but for now let’s watch it loom ahead, rising on the helium that is hope.  When it looks a little deflated, let’s imbue it with some more…just keep hoping.

After all, my friends, there are as many quotes about what courage is as there are about how dumb we are for not learning from history.  It all boils down to hope, doesn’t it?  And I am hoping, hoping…hoping…

 

Another Twelve Days come and gone…

We treated Christmas Day as we do any other Sunday.  Of course, I admit this was not intentional.  It’s not that we “missed” Christmas, but J had an early morning meltdown and we decided to turn the dial down and do Sunday as Sunday is usually done.  After about an hour of pure, unadulterated, overwhelming strife, J calmed down and we threw a little Christmas in here, and then a little Christmas in there until we had a nice Christmas dinner that passed for Sunday dinner.

Yesterday we braved the “Boxing Day crowds” that amounted to two people ahead of us at Target, and three at the arts and crafts store.  The line behind us at each store was non-existent.  All the chaos witnessed in other necks of other woods was absolutely absent at the time we left the house, and J was happy and he came home to relax.

The Christmas morning meltdown is easy to understand.  Dada had been home since Wednesday evening, a mini-vacation, and J was confused.  On Thursday morning we went for a medical appointment (mine,) and then for a very small bit of shopping at the grocery store.  On Friday we went to the movies.  We watched Rogue One.  J leaned back on his chair, munched on his popcorn, and smiled contentedly.  He just enjoyed the notion of being at the movies.  On Saturday we went out for a bit, and then TGG came with his family.

This was the first thing to throw J off.  He didn’t leave his room, but TGG went in with the kids, and that was out of J’s comfort zone.  We had a quiet Christmas Eve with our Twelfth Day presents, and then we went to bed.

Christmas morning didn’t have chiming bells.  It had a growl overheard through the baby monitor.  Then we heard the thumping.  We did our best to defuse the situation, but meltdowns have to run their course, and this one took a while.  By noon we had sort of evened our keels, and the rest of the day seemed better.

Today Dada went back to work, and J and I started putting away the Christmas tree ornaments, the lights, and the Rudolph the Red-Nosed Reindeer and Charlie Brown Christmas accoutrements.  The Christmas tree forest, the village, the train tracks (which have grown and grown) remain.  The rest is slowly being reeled in to make way for the New Year, and to make way for the Three Kings’ Day tradition.

I’m sure this portion of the year will be a bit of a slippery slope.  The holidays overwhelm just about everyone.  They also depress a lot of people.  We are doing our best to help J cope with the anxiety he might be feeling.  We understand that, irrational as it may be, he has trouble seeing TGG with a family of his own, and we can try to help him understand, but that doesn’t mean he will be able to maneuver through the emotions with ease.  The best we can do is try.  The best we can hope for is increasing degrees of success.

So we work on helping him, and helping ourselves in the process.  Now that the actual Christmas holiday is over, we can start taking things back to the daily routine that soothes him, and make adjustments from there.  He was happy today gathering up the tree lights and putting them away in the new storage box we bought.  The little tree (ok…the branches cut off from this one) in his room will go away today, too.  He might want to keep the lights, and we’re fine with that.  Light seems to be a soothing thing for J…especially when he can control it.

J was happy with his presents.  He tried taking some of ours, but we managed to prevent him from achieving his purpose.  He enjoyed helping in the kitchen.  He had fun with the tree and the lights.  He liked (LOVED!) decorating a gingerbread house.  He stole some of the candy, but that was to be expected.  All in all, aside from being overwhelmed at a certain point, he did great, and he had fun.

But we learn something new every year.  We figure something out with each passing holiday season, each run-of-the-mill month and day.  We are in a perpetual state of learning what we need to improve or change.  Yesterday, little clearance-shopper that I am, I found a little paper mache cabinet that has 25 drawers…and I will decorate it, and in each little drawer I will put an activity of each day leading up to Christmas next year.  I will mark the days when Dada will be home.  I will put little things that J can enjoy…a movie to watch, a craft to make, a task to complete to get us ready for Christmas.  You’ll see…I’ve figured out that some of the randomness of the season upsets him, and I will work on giving him a whole set of anchors to choose from.  That’s my goal, anyway.

We have plans for 2017.  We are hopeful that they will come to fruition, and that J will benefit from them.  For the moment, this last gasp of 2016, we try to organize our little household to advantage for all.  We try to slip into the usual routine so our boy can have his center…  That his center (and ours) is slightly off-center is fine.  The important part is that there is a center…regardless of where it is.  That’s goal.  That’s the aim.  That’s the all-important purpose of this game we play day after day.

We survived Twelve Days…a little bruised, a little humbled, but we survived.  Our little ragtag band of desperadoes has pulled off another holiday, and is getting ready for the next, and the one after.  It’s all we can do.  It’s all anyone can do.

And off I go to more chores supervised by (who am I kidding, right?  HE is the boss) J.

 

 

Last Day of Autumn…

Winter does not officially begin until tomorrow.  All this cold weather has been a tease, a come hither look from Mother Nature.  My bones and joints don’t appreciate it, but there it is…unless we move to a tropical climate, this is now the story of my life.

The first seven days of Christmas have been a success.  We have enjoyed the quiet pace, the relaxed mood, the adding tracks to the set-up in the Christmas village inside the tent…and trees…and assorted Lego concoctions that give interest and texture to the whole shebang.  J is happy.  Every time I bring another thing to put in there, he cranes his neck and, from the safe perch of his couch, gives instructions on what to do next.  Passenger cars have been added to the train, a rather large tree sits in the middle with lights rising up from the base and getting lost in the “sky.”  Five minutes sitting on the floor looking at all we have put in there are guaranteed to make you happy…

On Thursday, the 22nd, we will make the pilgrimage to the movies.  Our schedule for the week is thrown off because of Christmas Eve and Christmas Day.  J gets his Saturday and Sunday outings on Thursday and Friday.  We adjust to make his life more balanced, and hope that this is enough.

We think what we’re doing is working.  The meltdowns and SIB have dissolved into near-nothingness.  If he’s upset or anxious, the reason for his mood is easier to determine.  It is also easier to correct.  At five a.m. I hear him get up, go to the bathroom, and then stop at the hallway closet to get fresh bandaids.  He changes them himself.  No muss, no fuss.  J is, once more, in a place where he can exert some control, and this makes everyone happier…

Our fine-tuning of his diet is sort of working.  You don’t gain weight in one day, and you don’t lose it in one day either.  We are running, on average, about 2 miles with the Wii, and we are doing calisthenics that are helping improve J’s balance.  Still can’t get him to lay flat and not complain, but I respect this difficulty and work around it.  Some of his workout looks like those public television workouts for elderly people who have mobility issues, but a mom’s gotta do what a mom’s gotta do.  It is better to do a bit than to not do anything at all.  That’s the idea I’m latching on to, anyway.

Today I am hoping to do some baking.  I say hoping because I keep putting it off.  My hands, see, are not what they used to be.  The doctor has chosen fibromyalgia as my malady, but we are not sure that this is correct.  The idea of lupus was thrown out the window because I am no longer a woman of child-bearing age.  We wonder why not one doctor has X-rayed my hands to see if, perhaps, there’s some sort of arthritic thing going on.  Of course, no matter what I say -and I say plenty- no specialist that has dedicated years and hundreds of thousands of dollars to getting trained to be eagle-eyed for such things will acquiesce when a person with merely a M.A. in Liberal Arts says “are you sure there’s nothing wrong my hands????”  I work around the quirks, but it’s not easy: I can no longer make hollandaise sauce (because the hands “go” in mid-stir and so does the sauce. I can no longer embroider, color, sketch, or play the piano.

OK, I never could play the piano, but if I had been able to, I would not be able to do it any longer.

So my “hope” that I will get to make some baked good is in the incipient stages. I am waiting for the time when my hands are at their best…and this, fingers crossed, will coincide with J’s desire to make biscotti.  We’ll see.

The only thing troubling J right now is his tummy.  He is not sick, but he is not digesting well.  Yesterday I had to explain the concept of “constipation” to him; this is something I’ve done before but didn’t seem to click at the time.  I think now he’s getting it.  He has stated he is uncomfortable, and has accepted the remedies I’m offering.  I’ve explained he has to be patient because, sadly, these things don’t work immediately.  I explained that cheese doesn’t help, and he was not particularly amused by this information.  I explained that water helps…he understands this, and is making sure he drinks enough.  In the meantime, we wait, and he tells me (which is better than being angry and yelling, or hitting himself) if he is going to the bathroom.  I told him that, because he’s having trouble, I will follow closely, and wait to hear if he needs my help.  We are both mortified, but we are willing to work together to solve his issue.

I was thinking about the weirdness of our home life as I sat in the hallway this morning.  I was pondering why people who haven’t seen J in over fifteen years cannot fast-forward that last image they remember and accept the one I describe for them, or the one they see in pictures.  When I say “I cannot talk right now, J is in the bath” they imagine a child of four, sitting hip deep in bubbles.  No one thinks of the adult with hair all over his body, hands the size of holiday hams, deep voice and imposing physique.  I am not bathing a child, I tell them…I am bathing an adult.  It doesn’t quite sink in for the most part.

Of course, this is small potatoes compared to the bigger problems of the whole of mankind.  This problem, in fact, we can manage better because the anxiety and SIB are under better control than they used to be…

And so we move on to Actual Official Winter, and roll gently (over a bumpy road) to 2017…

 

It takes a village…inside a tent…with fake trees, and assorted out-of-proportion accoutrements…

And it is now less than a week to the First Day of Christmas and inflatable Snoopy is gone, the Humble Bumble and Snowman from Rudolph the Red-Nosed Reindeer are stored away, and J is now actively participating in all the other bells and whistles of the season.

Yes, ladies and gentlemen, J has accepted the tree stand, has hung an Advent Calendar of sorts (it is handy dandy and he puts things in it to extract on Christmas morning,) and the Christmas stockings are hung on the bedroom doors.  Thunderbirds are go!  Or partridges in pear trees…French hens, turtle doves, and so on and so forth.

We are hoping to bring a tree into the house tomorrow.  Preferably a Christmas tree.  But any tree will do if J is happy and excited about his favorite string of holidays.

This morning we spent some time making bake-clay Christmas trees for a mobile we’re hanging on the stairway leading up to the bedrooms.  J was very happy with this project.  It might be because it was fun, or it might be because it wasn’t a chore.  Either way, I’ll take his enthusiasm and run with it.

We go back to the psych on Monday.  The med is working, and what we see of SIB is rare and reserved mainly to the time previous to J’s bath.  He doesn’t hit himself hard.  It is more reminiscent of a display of OCD than of wanting to actually cause himself pain.  We have, however, heard more grunting from him, and this is unsettling.  The sound, guttural and sudden, startles us every single time.  The only other thing that he seems to be obsessing about is how tight the straps of his wrist brace are.  He comes and asks for help with this, and I can figure out if he is tightening them too much.

In general, J is in a much more pleasant and responsive state of mind.  He listens when I talk to him, and he seems more relaxed.  He will be impatient from time to time, but he no longer acts like a caged lion.  This is progress, yes, and we hope to -slowly and steadily- find better ways to guide him back to a spot where he doesn’t feel he needs the bandaids and wrist brace 24/7.  The cut he had between thumb and forefinger has healed, but he wants Betadine applied to the area, and Neosporin.  These are, obviously, unnecessary and effect nothing, but they soothe him.  He hasn’t complained of headaches for a while, and has just had issues with the dry air that results from the central heating running more frequently.

All in all he is doing well, but the pill is most definitely making him eat more.  He is open to negotiation, though.  I have managed to get him to eat less of certain things, and more of others.  He no longer has to have all the cookies in a serving, and he accepts that there are days when he will skip his yogurt, or some other snack because he had had something else.

The system is not perfect, and I don’t expect it to be.  The system will work as best it can, and we will address all the complications arising from this alteration in what was “normal” as time progresses.  We are, because no one else has the ability to do this, cutting ourselves a sufficient amount of slack so we don’t get too discouraged, or become ineffectual because we feel like we’re failing.

There is a cold snap heading our way so we are adjusting our weekly schedule to make sure J gets to go out, and we get our errands run in what is healthier weather for him.  Instead of an evening outing, Dada will be taking J out to do his shopping tomorrow morning while I am at a medical appointment.  This should be something that J enjoys because Dada is a lot less adept at knowing what is already available in our pantry and J can be like Scrooge McDuck with his supplies.  The only thing they ever have issues with is Orville Redenbacher’s Cheddar Cheese Microwave Popcorn.  Dada hasn’t managed to master the art of steering J away from it, and that thing -forgive my bluntness- stinks up the house so massively that I often find myself agreeing to some other horrid snack just to get J to accept Orville Redenbacher’s Naturals Simply Salted instead.  It was in this way that we ended up with sizable bag of Skittles, but they get dispensed at the rate of two red, two green, two yellow, two orange and two purple a day.  No more, no less.  If it’s in a small plastic container with a lid, regardless of how small the amount, J accepts that it’s a snack.  Plus I remind him that he gets one Pixie Stix for each dose of med he gets each day.  I think the trade-off is fair.

The trees are mostly bare.  The wind is cold.  The sun shines, but it’s not warming up anything in a way that would inspire us to stay outside for prolonged periods of time.  When it rains, my bones and joints scream at me rather rudely.  Winter is a couple of weeks away, but it clearly is announcing that it means business.

This probably figures prominently in J’s willingness to get “into Christmas.”  His Christmas village is quite adorable.  The train tracks are still under construction, trees are added sporadically, houses find their way into corners, and Santa Claus is hiding towards the back.  J turns on the lights in the morning, and makes sure they get turned off before bedtime.  He learned the lesson of how cats will nest in there if he leaves the door open, and now he closes the door when he heads up to bed.

We are getting there.  We are closer.  It won’t be like other years, but we are finding yet another new normal, yet another groove, yet another all right, good, awesome, this feels good.

 

I’m with the band(aids)

The lovely people at MFSACO have given me a discount.  I think they know we’re in this for the long haul, or they think I run a small clinic in a small town.  Either way, I intend to use that $5 discount for more bandaids…even though the frequency of use has diminished significantly over the past two weeks.  We are down to, drumroll, TWO packages of bandaids a day.  That is down to two from, oh, six? seven? a day…  Progress.

The bump on J’s head is getting smaller, too.  Slowly, of course, because he still hits his head though not as violently as before.  It can still be pretty bad, but nowhere near as horrible as before.  J now seems to be able to slow himself down, and when I point to the NO HITTING signs in his bedroom, bathroom and the kitchen, he is more aware of what I’m trying to tell him.  He has, once more, started apologizing when he realizes that he’s upset me…even if I keep a calm exterior.  Progress.

He gets up early, and he gets his bandaids from the closet.  He starts the process of changing them out, and we hear no SIB, no fretting, no whimpering or yelping.  He knows we know he’s up, and he waits because by now he’s sure one of us will come to his aid.  He is patient when we do this.  He no longer takes any delay (caused by older eyes that cannot see as well as they used to, or poor lighting that that doesn’t help matters, or the fact that we’ve just woken up and haven’t had coffee) as an excuse to go off into a self-harmful tirade.  Progress.

Still, it is a process, and we’re working our way through it.  There are ups and downs, and side-to-sides…  We have running-in-place moments, but we make progress nonetheless. Progress is inevitable, even if it’s not in the shape or form that you wish it to be; regress is also inevitable, and we deal with that by circumventing the old way and reframing a new one.

The fact that we’re seeing more enthusiasm and involvement on J’s part is good.  We can now call him to help with dinner and not be met with resistance.  We can ask him for a walk, or company, and he’s not annoyed by our request. From time to time his tolerance for our company, presence, or desire for interaction is lower, but we understand that…it’s, we suppose, normal for a 21 year-old regardless of his other issues, to not want to be attached to mom and dad all the time.  By the same token, it is also normal for mom and dad to not be perpetually in a frame of mind that is all about “the kid.”

The weather isn’t being kind today either.  It’s moody.  We are, once more, not working on decorating the outside of our townhouse for Christmas on this dreary day, but we have lined everything up for when it’s the right time.  In the meantime, the Christmas tree forest grows.  Seeing the evolution of his TV room into some sort of mini Winter Wonderland has inspired J to tidy everything up.  He did a thorough job of vacuuming, and we shifted the cushions on his couch and tucked the slipcover into place properly.

A couple of Christmases ago J went on an outing with his aides at school, and he brought home a Disney Fairies pillow from the Dollar Store.  I was surprised…not because it was  Disney Fairies pillow, but because -until that moment- I was unaware that Tinkerbell has a social circle outside of Peter Pan and the Lost Boys, but goes to show how the world still spins when I’m not paying attention.  This pillow is J’s pride and joy.  By that I mean that he has it in pride of place on his TV room couch, and he sits on it.  (Whatever notions of Monty Python‘s Sit On My Face are being worked into that image, I seriously doubt that it has crossed J’s mind.  The only Monty Python song he frequently plays on his iTunes is Always Look On the Bright Side of Life…a more fitting anthem to the goings-on around here, I would say.)

We had noticed that the Disney Fairies pillow was looking deflated.  (I’m being generous…it looked as flat as a pancake at times, and lumpy as bad gravy at others.)  In the spirit of Holiday Preparation, I disassembled it today, removed the original filling, and replaced it with an old pillow.  Yes, I had an old pillow handy.  And by old pillow I mean “a pillow that briefly met with J’s approval, but soon fell out of favor for sleeping purposes due to reasons unknown to us but logical enough for J to warrant parking outside his door as a result of irreversible banishment from his bedroom.”  I don’t toss these things.  If it cost more than five dollars and didn’t come from the back-to-school or your-relatives-are-descending-on-you-for-Thanksgiving sale, I keep these pillows packed in plastic.  Yes, I have a lot of pillows.  When a heavy-use pillow kicks the bucket (or when someone has the flu or a bad stomach bug) I replace it with a pillow from the Pillow Bounty.  Today I dissected the Tinkerbell and her Girl Squad pillow, and replaced the contents with a clean, newish, serviceable pillow from that stash.  J, feigning ennui and failing miserably, received the pillow once it was done. He kicked me out of the room (after I insisted on being shown some measly amount of gratitude,) and I could hear him giggling as he, once more, unceremoniously went back to the job of flattening the pillow over the course of a couple of years.  (No worries, as I mentioned, we’re covered for refills.)

We make progress.  Of sorts.  We will, at one point or another, stop hitting walls as frequently as we have been, and -on the plus side- that has already started to happen.  The walls are a little farther from each other, and we are learning the way and understanding the fine art of anticipating tight corners.  Progress.  On all fronts…and backs…and maybe on the sides, too…