On the Ninth Day of Christmas, all is quiet and happy all over the place…

Things are going well.  The med is gone, baby, gone, and we’re definitely hanging in there.  Four and a half pounds lighter, and still hanging in there.  A little obsessed with the band-aids, but hanging in there.

Is J a little antsier?  No, not really.  He’s a little more prone to boredom, but he’s also a little more enthused about helping.  He waited patiently for the time when we actually could leave for the theater to watch Star Wars The Force Awakens, and this even though we were supposed to go the (we discovered suddenly) sold-out 10 a.m. show…he also patiently waited when he realized that the 1:50 show was sold out, too.  He was ok with coming home, putting groceries and purchases away, and eating lunch before actually heading out to the theater with a rather long, drawn-out stop at Barnes & Noble.

All this sans Risperdal…

If you had told me J wouldvpatiently wait through reversal of plans after reversal of plans…  Yes, he’s picked at his chin a bit more than usual, but he LISTENS when I tell him we have to wait a little longer.

On the  “not-quite-good” news front, the psoriasis made a comeback, and this time it was next to J’s goatee.  We thought, initially, that it was razor burn, but as soon as we recognized the characteristics, we applied the lotion his doctor prescribed and the patch disappeared in short order.

Of course, I have to point out that first I had to FIND the lotion.  J, seeing a prescription label, assumed this was something one drinks and, based on experience, assumed it would taste like crap and hid it.  He hid it along with my wrist stabilizers (which I’ve been needing and wanting,) and several other items that -to him- are not “friendly.”  Once I explained that the prescription was for that patch on his chin, he allowed me to take it out of the box, and put it in his bathroom.

We are negotiating a lot more.  Today, for example, we negotiated chocolate chips for every task he completed while we baked biscotti.  I’ve never had a more avid helper, or one who can bounce so easily from dark chocolate and semi-sweet chocolate chips with such alacrity.  He was disappointed when I told him we were done with the baking for today, and accepted his chocolate chip-less fate with aplomb.

By now, as you may know, we are deep into the Twelve Days.  It is, as I type this, the aftermath of the Ninth Day of Christmas, and this year J has actually sung the song with us…if he doesn’t raise his voice, I can see he’s enunciating rather nicely, but we -sadly- drown him out.  He’s not thrilled about Miss Zelda’s eager participation in the ritual, but he tolerates it as long as the cat sits next to Dada and doesn’t attempt to approach J’s present.  The fact that we now have a cat that, regardless of where she is in the house, hears The Twelve Days of Christmas and runs to arrive in time for gift-giving is yet another sign that this is not a run-of-the-mill household.  If she has not left the room for any transaction in another area of the house, she is calmly sitting under the tree, waiting for us to join her…

The weather has been kind…sort of.  When it’s cold, it’s very cold.  The rest of the time it’s basically gloomy or rainy, or it rains.  Winter begins now, I remind myself, and January will make up for all that we’ve missed so far.  I get the feeling that snow days (or harsh weather days) will abound.  In my efforts to over-prepare, I might have had a hand in the persistence of warm weather, and I think I (and everyone else) will pay for it in the coming weeks.

But J is happy.  J is calm.  J is handling himself beautifully, and I cannot help but be hopeful about everything else.  I will not go out and buy a lottery ticket anytime soon, but I will definitely savor this uptick in goodness that comes from the med being gone and J exercising his most mature self in the process.

I can’t ask for more.  Well, I could, but that would be the same as being ridiculously greedy, and we want to spread around the good stuff to those who need it…

We are happy being happy with the happiness we have…we hope some of it comes everyone else’s way too…

 

 

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Crashing and burning our way through the Twelve Days…

The med is gone.  Callooh callay, o frabjous day!  Like gone gone.  Like we don’t miss it gone.  Like aside from one small outburst related to not getting his snack, getting rushed into the bus, and not having his Christmas presents to bring home right then and there, J has been nothing more than slightly antsy…

But, boy, have his Twelve Days sucked so far.  It will start getting better tonight, but I simply had to not give him the really cool stuff when he might be super antsy and super ready to growl…  He likes his new slippers from L.L. Bean, but -then again- who wouldn’t love those?  And he’s accepted that he now has TWO flat caps he can wear, and one of them is green.  The other stuff he hasn’t found particularly exciting has been hidden in the TV room…or put, face down, on the bench in his bedroom.

Tonight it gets better because it’s a bag full of cool t-shirts, and J LOVES cool t-shirts.  Tomorrow night the movie extravaganza begins, and I will become a very popular girl until the Twelfth Day is done and over with…

I admit that I’ve tried not to make the transition TOO easy because then we wouldn’t really know if J is OK, or if he’s just so complacent about his circumstances that there’s no need to act out.  I don’t want to create an environment in which J doesn’t have cause to be irked, but rather teach J that when one is irked, one works through it.

So far, so good.

Today, first day of Christmas break, J actually woke up early, but hung out in his room until nearly 8 a.m.  If that doesn’t have a hint of Christmas miracle in it, I don’t know what does.  TGG had him help with chores (yet another Christmas miracle-like occurrence, people…TGG is being nice and helpful,) and then we worked on a paper garland before sitting down to lunch.

The mood has been good.  He isn’t a barrel of laughs 24/7, but he is happy and easily redirected when he’s starting to look bored or annoyed.  The house has been cleaned, and J has been supervising just enough to prove that his personality is unchanged by the absence of the Risperdal.

Perhaps Dada was right when he said “but he’s taking so little of it!”  Perhaps we managed to taper off the med in the wisest way possible, and we made the right choices at the right times…

The truth -the whole truth, and nothing but the truth- is that J still has “issues,” and that will never really change.  J is autistic; J has moderate mental retardation; J is non-verbal.  J will always have challenges and problems that might seem insurmountable from time to time.  The truth -the whole truth, and nothing but the truth- is that we are still wearing enough band-aids to make it look like there is something REALLY wrong with our hand, and there have been moments when J’s skin has become so dry that we’ve had to apply ointments to restore his skin to its normal state.  The truth -the whole truth, and nothing but the truth- is that we will always have something to address, something to do, something to tackle…and that’s fine.

The Risperdal was a step in a longer, more winding road.  We had issues, major ones, to contend with at the time when the Risperdal came on the scene, but those issues are (for the most part) resolved.  Will there be another actor entering the stage to perform a crucial role for a time?  That’s always a possibility.  No one can guarantee that the current state of balance and calm that J is experiencing will be permanent.  Regression happens, and it doesn’t just come in the shape of forgetting how to complete a task unassisted.  Sometimes regression comes as slipping back into harmful behavior that cannot easily be redirected.

You will, I hope, forgive me for having a tangent-prone mind.  I have often found myself reciting (in my mind, of course) Robert Frost’s Stopping by Woods on a Snowy Evening when in the midst of some autism-related conundrum.  I know…one has nothing to do with the other, but I did tell you just now that my mind is “tangent-prone.”  The poem goes (and forgive me for foisting it on you):

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

I guess it’s just the whole thing about promises to keep that pulls me in, or maybe it’s just the cadence of the lines floating in my mind.  Somehow, I’ve often found myself facing a tantrum, a meltdown, a crying fit, an obstinate bout of grunting while Robert Frost bounces around in my brain.

OK.  My thoughts don’t always lean towards the loftier sentiments of Robert Frost.  I have, on occasion, confronted a conundrum while reciting The Grand Old Duke of York to myself; I have also asked the other people in the room to join in for a hearty rendering of Witch Doctor, and this strategy tends to confuse and delight J into calming down…only he knows why this is effective.

So, there you are, we are hanging in there quite successfully, and the Twelve Days of Christmas are about to improve for all of us.  The temperatures are nothing like autumn, and certainly nowhere near an approximation of winter, but we are undeterred…

‘Tis Christmastime…

and we have miles to go before we sleep…

 

 

The absence of Risperdal becomes noticeable…

J’s a little more impatient than usual.  J’s a little less easygoing than usual.  J’s easily redirected, but there’s a jadedness to his compliance.  I think I’ve seen “yeah, yeah, yeah…whatever!” scroll slowly across his forehead when I’ve endeavored to ease his antsy-ness.

The First Day of Christmas has come and gone.  It could’ve been better, but the fact that it’s much warmer than usual for this time of year, and J has a cold didn’t help matters.  He was happy about his new slippers (hey, who doesn’t love fluffy, warm, good-quality bootie slippers from L.L. Bean???,) but he wasn’t in the mood to linger while we opened our presents.  I had TGG open his present first, and J sighed so loudly the Christmas tree swayed a little…

Today, because these things can’t be seamless, is his Christmas shopping trip and his lunch at a restaurant.  He is armed with cash for his purchases, a shopping list, and a team of people who know what they’re in for since we’re off the Risperdal.  TGG is working today so he will let the teacher know if, because going off the med is like a video game where things pop out of nowhere to add difficulty to playing, there are assistance dogs being trained at the store today.

We are not expecting a full-on disaster, but we know better than to think this will be like the animated sequence in Mary Poppins with the penguins and the music and the butterflies fluttering in and out of the scene.  I expect some Miyazaki details thrown in there…a dose of heightened reality and apparent dissonance to crop up and remind us that the body’s chemistry is not something one messes with lightly.

All in all, we are doing well.  We know J is working very hard at navigating this, and we’re trying to help him.  How well we are doing remains to be seen.  Today is his shopping trip, and tomorrow is his class party.  Since he’s not taking finals, his holiday break will start at 3 P.M. tomorrow, and we’ll have to make adjustments here and there to keep things running smoothly.  This is all, as usual, something we can do within reason, and we will -of course, of course- pick our battles with as much wisdom and humor as we can muster…

Well-wishes are always welcome and appreciated so wish us luck…

 

 

Suddenly, the end of the year is upon us…

How fast did the past few weeks go????  Sacrosanct bovine!  I could’ve sworn Halloween was yesterday!!!

Nope…it’s already December 7th, and we’re looking at 74 years since the attack on Pearl Harbor.  We’ve had several more mass shootings since I last wrote.  The world is an upside-down, very scary sort of place, and -after today- we have only Tuesday, Wednesday, Thursday, Friday and Saturday of J taking med.

And then the med is GONE.  Gone forever.  Gone for good.  Gone.  G-O-N-E…gone.

Are we ready for this?  Well…yes.  Is this the best time to do this?  Well…maybe not.

The tension with TGG continues.  He’s like the bull in the china shop that then turns around and says “what?  What did I do?” while standing in the middle of a sea of shattered glassware.  Sigh…

Dada has had to travel A LOT lately.  He was gone all last week, and things got a little topsy turvy with J’s schedule and routine, but we managed.  (By the way, nothing says “I missed you” in a person in the Spectrum like greeting someone who’s been gone all week by insisting they change out of their street clothes and put on their pajamas IMMEDIATELY!  Dada had to finish getting his stuff from the car wearing his fleece pants, his Mr. Incredible t-shirt and his fuzzy slippers.)

Of course, when we had looked at the calendar to calculate the date of the last pill, we hadn’t really let it sink in that it’s a Saturday, the day before the First Day of Christmas, three days before Dada has to do a day-trip for work, and two days before the class shopping trip for J.  As soon as my brain registered all this information, I hyperventilated a little.

After nearly six years of having that (shrinking) safety net, we now won’t have it at all.  As we stand on the edge of “one more change,” we look over our shoulders and wonder “have we done enough?”  It’s all in what we’ve done over time, you know.  If we’ve helped J develop the skills to handle his anxiety, fears, concerns and frustrations, we should all be fine.  If we haven’t, well, we’ll have a slightly rougher time of it.

To be quite truthful, there are days when I think that, yes, we’ve worked our asses off to help J, and there are others when I think we’ve fallen short of doing the best job we could do.  Second-guessing is an enemy we face often, and sometimes we smack it down, and sometimes it smacks us down.

One of the greatest problems I face (and this is ME admitting something that isn’t quite stellar about myself) is that I’ve reached an age when I feel I should be “done” with raising children.  I know I am NOT, but there are mornings when the alarms starts buzzing (and Dada’s alarm is very alarming…the volume and tempo of the buzz increase if you don’t promptly answer its initial beckoning,) I think to myself “crap!  Again?  I have to do this all over again?  And I have to have the same so-so results???  What if it’s a “bad” day?  Can I still navigate a “bad” day when I’m becoming increasingly achy and cranky????”

I know I can do this.  I am equipped for it by now, but it’s not EASY.  This is not a walk in the park for us, and J’s degree of dependency on us chafes at him, too.  Like any other adult, he bristles at having to ask for help with certain things, and I know it bothers him that he still requires help with things that other guys his age do independently.  The other day he was constipated, and having to admit this to me (his middle-aged, slightly cranky, glasses perched on the tip of his nose mother) is not easy.  I, after all, need to lean on him on days when I can’t walk without limping.  In the midst of tending to his digestive needs, I explained to J that I need his help from time to time, and some day I will need a lot more help in a lot more ways.

I know I can do this, but to that I have to add “for the time being.”  Eventually, I understand, it will all be “too much,” but right now I can do this.  J can do this, too.  J is beautifully equipped for this transition, and for continuing to develop skills and techniques for coping with life.  Of course, there WILL BE days when it’s all “too much,” but we all have those.  I’d rather have him try and fail than not try at all, and I have made sure that we all discuss this transition so that we can be helpful and supportive.

And here comes the one fly in the ointment: what do we do about TGG?  It seems to us that he has sort of “checked out” from our family experience, and we understand that this is part of growing up and wanting to be independent, but………..

Feel free to chime in; this is an issue that might ring bells in your minds if you have more than one child, and if you have children in the Spectrum and neuro-typical children co-existing in your family.

There is a balance that has to be struck when your family dynamic is altered by adulthood.  Ours is a home where communication is an issue because one of our family members is on the more severe end of the Spectrum.  We have had to jump through hoops, learn ASL, insert PECS into every room, go over things twenty-thousand times before we manage to nick the outer shell of J’s communication difficulties.  Talking about someone present in the third-person, or falling into awkward patterns that weren’t there before doesn’t help.

We had asked TGG to try to strike that balance while we take away J’s med, but I don’t think that TGG understands at all what we mean.  Deep in the throes of love, he has ceased speaking our language, and has learned another…one that belongs to a group of people who don’t truly understand what life in our tribe is really like.  Their customs, habits, rhythm, patterns are different from ours, and TGG has embraced them like a drowning man embraces a passing log.  In the process, he has discarded the language that would allow him to help his brother understand why so many things are changing at the same time.

So we are headed to territory that is somewhat familiar, but we are navigating a little blind this time.  Not a lot blind.  Just a little.

It’ll be fine.  In the end we’ll figure it out just fine because we always do, but we might experience a little turbulence along the way…or maybe not.

Let’s have a little faith until we get there.