November’s last gasp…

Rain, rain and more rain.  It was a cuddle up and stay in his room morning for J, but his mood continues to be good.

The only thing I’m struggling with is how tightly he straps his wrist brace on; I tell him there has to be some wiggle room, and he refuses…respectfully.  I understand that compression is a soothing resource for him, but I worry about circulation. Once in a while we find a task that will require both hands and no brace, and we make sure that his hand moves around and blood circulates freely.

One of the happiest aspects of having the med back in his life is that J has returned to the kitchen to help.  Last night he helped sauté mushrooms, bacon, garlic and potatoes…it was lovely.  Not only was he actively involved in making dinner, he was smiling and joyful throughout.  Unless you’ve experienced surly, dissatisfied J you have no idea how wonderful it is to see him pointing at herbs and spices that he wants to sprinkle on what he’s cooking.

It being “baked goods week” in the bedtime story rotation, last night he had The Little Red Caboose read to him.  Dada goes off-book on that one, too.  J laughs and laughs.  We hadn’t heard that a few weeks back when the story was read to him.  He is not a barrel of laughs, mind you; he is not in a perpetual state of “hey, dude…life is AWESOME!”  Our son is not drugged out of having ups and downs.  Our son is now open to not being surly and moody, and grumpy and self-injurious all the time.

Now that Risperdal has entered the picture once more, we are working on J’s nutrition plan.  We know the med will make him gain weight, and we want to work on helping him regulate this as best we can.  Exercise is a big part of this; as long as we can control diet and exercise habits to the degree that his blood pressure stays at a healthy level we will be happy.  Right now his routine alternates between the elliptical machine and the Wii.  For the elliptical machine he gets on and watches a movie.  He’s usually on there for a whole hour unless he’s not really into it.  The movie has to be a musical, of course; yesterday he switched from Mary Poppins (a lifelong favorite) to The Music Man, which he has owned for a while but never really wanted to watch until now.  I have to say that Robert Preston and Shirley Jones seem to have charmed him because he was actually on there for an hour and fifteen minutes, giggling and laughing all the way.

When we do the Wii, we also do weighted balls, and resistance bands.  Mind you, J’s movement is limited, as I’ve mentioned before, but he enjoys the exercise.  We are not training for the Olympics here; we are, however, keeping our bodies moving and socializing at the same time.  Sit-ups, as I mentioned, are tricky because J doesn’t like to be flat on his back, but little by little we are adapting them so he works his abs, and leaves his comfort zone slightly.  I will not force him to do something that is scary to him, or that causes him anxiety, but I will try to soothe him into more effective positions for the intended purpose.

Since gloomier-weather days are upon us, we will be indoors more and more.  This has its downside, and we are hoping that, once we relocate, we will be able to provide J with a house that has an area that allows him to be “outside” while still being “inside.”  We spend a lot of time on Zillow and Trulia looking at houses in our potential new locations.  Thankfully, screened-in porches are not unusual there, and neither are fenced-in backyards where we can grow our garden.

We are, as usual, approaching this like D-Day.  We are studying the job market, the availability of services for J, commute times, accessibility of shopping for basics (Dada jokes that Target, Michael’s and a Five Guys are musts…but we know this is not entirely realistic,) and the affordability of homes in each area.  We have a list of things we want in a home of our own, and granite counters and stainless steel appliances don’t even figure in it.  We wouldn’t want a septic tank, but that’s still a negotiable point; we’d also like a gas connection in the kitchen…I hate glass- and ceramic-top stoves, but will live with an electric stove where I can see the burners and my pots and pans don’t slide as they get hotter.  Those are trivial requirements compared to what we want for J: a bedroom, an area for his daily activities, a nice bathroom with a tub and shower, and a space outside.

We don’t have to look at school districts anymore, but we do need a hospital or urgent care close enough in case of an emergencies.  We don’t have to worry about daycare, but we would like a park, or places where J could go and enjoy some outdoor time when he can see people other than us.  We would LOVE a place where there are opportunities for a day program for him.  If this all means we take a huge pay cut and simplify our life to the most basic things, so be it.  For J’s comfort and ease of adjusting to such a huge change, we would love to find a house that doesn’t need anything major done before we occupy it, or during the first year of us living in it.

Of course, it’ll be March before we make the formal first steps to achieve all this.  J’s dental work comes first, and we need to figure out what the underlying causes for his recent spate of anxiety and SIB are before we commit to uprooting our lives and relocating.  There are, of course, those “ifs” that we must keep in mind.

We end November in a more hopeful note than we had at its beginning, and we enter December with a list of caveats.  We have plans, and we have hopes and aspirations.  Their modesty, compared to what we had before now, makes them no less important than they deserve to be.  It’s all about the little by little, the one foot in front of another, the journey of a thousand miles, and the focus of our lives being where it has to be.

Deep breaths, November.  Inhale…exhale…you will soon expire, and we’ll still be here…breathing…doing our homework.  ALL our homework.

 

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Things that don’t go bump in the night…

Getting back into the usual groove, the daily routine after a holiday, is not easy.  We had grown, in very short order, accustomed to the slow-moving mornings, the leisurely consumption of meals, the waking up a little later and lingering in bed a little longer.  The absence of SIB (or the significant reduction of random thumping sounds through the baby monitor) helped this easing of the daily urgency of action.  Yesterday morning we were all slightly “off” and by last evening we were attempting (valiantly, exhaustedly, desperately) to regain that mindset that says “you are not people of leisure.”

Dinner was calm, quiet, enjoyable.  There are things we try to do to push the madness of the world out, and sitting down to dinner is one of them.  OK, we also sit down to breakfast, and -if we’re all home- we sit to lunch and to have coffee and cookies, or cake, or ice cream.  We are sitters.  We set the table (yes, even for breakfast,) and we turn down the revolutions of the grindstone.  Even if we’re just having coffee and toast for breakfast, we sit down and relax while doing it…the rest of the day will be hard enough, no?  Why start off in a hurry???

Soon after J had left the table a soft knocking on the door startled us.  Six-thirty P.M.  An odd time for the mail, UPS or FedEx, but not too out-of-left-field.  Dada and I looked at each other and asked “are you expecting anyone?”  The knock was strange.  It was almost intimate.  I asked Dada this morning “didn’t you get the impression that it was almost as knocking on the speakeasy’s door?  Or the French Resistance meeting place?  Or the Underground Railroad’s safe house?”  He said yes to all of the above.  We skulked upstairs and looked down at the driveway, and saw no one.  The neighbors, I reflected, would’ve rung the doorbell, or they would have called.  I asked them this morning and they said “no, it wasn’t us.  We would’ve called, or rung the doorbell.  Under extreme circumstances we would’ve pounded on the wall vigorously.”

We are not random “door openers.”  In this town, sadly, home invasions have become more usual.  It’s not forced-entry unless you don’t open the door, or unless you don’t get pushed into your house by the person who knocked and you naively let in because they were selling vacuum cleaners.  (Yes, we had one of those a couple of years ago…)  We are chicken shits, if you will.  We are all about prevention.  We have a doorbell, and if you ring it, we will see if you are someone we know.  If we don’t know you, we won’t let you in, end of story.  I always answer the door with the phone in my hand, my knee pressed against the door, and my shoulder leaning in.  It’s going to take a bit of effort to push past me, and there’s a big stick by the door, too.  As I said: I am a chicken shit.

The rest of the evening went well.  We heard a lot of clattering outside, and even went to check and turned on the porch light, but we were not in a panic (chicken shits though we may be.)

At 10:15 we brought J upstairs and he got his story.  Last night it was If You Give a Pig a Pancake, which makes it “baked-goods week” in the story calendar…and, yes, we know pancakes are not baked, but If You Give a Moose a Muffin is in there for tomorrow night so it’s an inside joke.  Dada always starts with “this story is brought to you by the Mouse With a Cookie,” and then he veers into the realm of ad-libbing with “it was a windy day, and a vagrant pig (or moose) was lurking menacingly, peeking through a window in search of something to eat…preferably free of charge, and abundantly available.”  I am seldom in the room for readings because J prefers these diversions.  Dada gauges how much is needed based on how quickly or slowly J is eating his ½ cup serving of bedtime cereal.

Once the story was read (and I know that was a big digression, but -hey!- my 21 year-old still enjoys bedtime stories better suited for much younger children, and we think that’s cool,) Dada and J went through their usual COFFEE?  WORK?  COFFEE?  WORK? routine and I went in and kissed him goodnight (also getting the COFFEE?  WORK?  COFFEE?  WORK?)  We climbed into bed, and Dada pretended to read while snoring with his eyes open.  After the usual nudge, goodnight kiss, and turning off the light, he was out and I read for about twenty minutes.

Shortly after I had settled in and was concentrating on drifting off, J’s bedroom door opened quietly, and then hallway closet door opened quietly.  A minute went by, and the closet door closed softly, and then the bedroom door.  Through the baby monitor came the sound of the fan and the humidifier.  No fretting, no grumpy grunting, no SIB…nothing.

I waited a minute or two, and then -without turning on the light- I shuffled to J’s bedroom.  I could see the soft glow of his fairy lights, and I went and knocked softly.  I wasn’t wearing my glasses, but I could tell he was sitting in bed.  And he wasn’t startled to see me, but his demeanor was “oh, I woke you up?”  I asked if he needed help, and that’s when I noticed it…

J was changing his own bandaids.

Yes, friends.  The kid who was so impatient he couldn’t be bandaid-less without beating himself up was quietly sitting on his bed, bandaid-less.  The bandaids were laid out on his bed, most of them still in their individual wrappers, and he had started the process of placing the one he likes to have in the crease between his thumb and forefinger.  I asked if he needed help, and he said HELP.  He kept looking at the door.  I think he was wondering if he had woken Dada up, or if we were upset.  I took that moment to tell him how proud I am that he felt he needed something, and decided to be independently proactive about it.  We finished putting the bandaids on, we added the wrist brace, did the whole COFFEE?  WORK?  COFFEE?  WORK? thing, and he hugged me tightly.  I kissed him, told him once more how proud I am of him, and how much I love him, and then he gave me a BYE that said “enough of this malarkey, woman!  Out of my room!”

I tiptoed back to bed with my heart buoyed by this little act of calm independence.  J wanted his bandaids.  He wanted them badly enough to crawl out of his comfy bed, put his slippers on (this young man will NOT walk around barefoot except when immediately stepping out of, or into, the shower.)  J quietly opened his bedroom door and the hallway closet door, turned on the battery-operated light in the closet, counted his bandaids, quietly closed that door and his bedroom door.  He took control of his own anxiety, and he didn’t want to bother us…

I’ll give you a second to let that sink in…

Uh-huh.  I cried.  Quietly.  Not wanting to wake Dada up.  For a while.  And then I went to sleep feeling so proud I wanted to wake up the neighborhood.  I didn’t, of course, but it was the first thing I told Dada once I’d sipped my coffee and was capable of stringing words into a coherent sentence.

And, yes, he welled up, too…

So…yeah, back into a groove after the holiday…this one feels pretty darned good.

 

With Thanksgiving done…the free-fall to Christmas begins.

Stop the year!  I want to get off!  Why is it going so fast?  Why is it suddenly the last Monday in November?  Did I blink and miss some of 2016, or am I just now suddenly realizing that time goes faster because we’re older??????

Deep breath.   And another…   and another…

Yes, my friends…it is not yet December, but it’s less than a month to Christmas Day, and the year is basically on its last legs.  What a year it has been!  We have had several rough patches (all of them belonging to different categories,) and we seem to -finally- be witnessing the slow dissipation of the fog that has been J’s mood and attitude lately.  We have had, since Friday, a much happier son than we’d had in a while.  On Saturday night, as he hugged me before bedtime, I whispered to him “how we’ve missed you, kid!”  He smiled broadly, and giggled his way into bed.

More and more we see more of him.  Less and less he seems to spiral out of control when his bandaids are off, or when the brace is removed, or when he is momentarily put out of sorts by something trivial.  We still have to negotiate and remind him of things more often than we used to, but he’s getting closer to being less dependent on our cues and appeasements.  This is, of course, what we need: the opportunity to communicate with him with greater ease.  It is when he is too riled up, too tense, too anxious, too defensive, too self-involved that we have problems communicating, and the med seems to have dissolved some of the thick outer shell he had developed.  Or, maybe, the thick shell was inside, and we’ve just managed to melt it a little.  Only time will tell.

With Christmas just around the corner, we’re working on getting motivated for it…I think the past few weeks have been so emotionally grueling that we might be hesitant about this.  We want, above all else, for J to feel up to it all. We are trying to figure out the best way to not overwhelm him, and so we are going slowly.  I walk with him around the store, and I ask him what things are; he tells me Christmas tree, lights, or he hums Christmas songs.  But we’re not pushing the whole thing to the point where it has to be now, or even soon.  We’re just easing into it.  That he’s been listening to The Waitresses’ Christmas Wrapping on a loop is not necessarily encouraging, but we’re not taking it as a sign that he’s “over” Christmas either.  Maybe he’s just trying to say that he’s not quite “there” yet.

On our Saturday outing we stopped at the crafts’ store, and J helped pick out the garlands and bows we’re using for outdoor decorations this year.  He also helped me find small Christmas-themed boxes for the gifts Dada gives his co-workers each year.  At the store they had a display with small boxes that had winter and Christmas designs, and J didn’t want any with Santa Claus on them; he chose penguins, snowflakes, tartan plaid, wreaths…got very upset when I pointed to Santa Claus.  Santa Claus, however, figures prominently on the wrapping paper he chose for this year’s presents.  So I guess it’s not personal, but the medium didn’t seem appropriate?

Dada is back to work today so we resume our usual routine.  This morning we’ve already made beds, loaded the dishwasher, and are now on a short break before we launch into other chores.  The Waitresses are still singing, but J is in a positive frame of mind.  I don’t want him doing somersaults, and bouncing about in a musical production number sort of way, but I want to see him open to things.  That is the key to making this work…

Well, there are chores to do, and a batch of soaps and bath salts we must produce and package today so they can be labeled and mailed to my cousin.  She put in an order to give to her husband’s staff, and J has been (in spite of his less than stellar mood) working on this project little by little.  He’s done very nice work, I have to say, and he does enjoy seeing the end result once he’s cut ribbons, printed labels, mounted them on pretty scrapbook paper.  He especially likes melting wax and using a J-stamp to seal the wrapping.  It’s all part of a process that makes him feel he’s going from raw materials to a completed product, and it gives him purpose.  He likes that…

Well…November is slowly reeling out to its last day, and we have things to do.  Every day, we hope, will be a little bit better…  Maybe 2016 won’t end on the note we had hoped for when it started, but it won’t clang dissonantly, discordantly, cacophonously as we had briefly feared it would…

It’s still gone too fast, hasn’t it???

 

 

 

Thanks…given.

 

Our not-quite-empty nest was active yesterday.  An early trip to watch Moana at the theater was followed by SIB, and then by roasting the world’s smallest turkey.  Our new roasting pan, bought on clearance several weeks ago, helped roast the bird faster than expected so our six-thirty dinner time turned into five-thirty (yes, the bird was cooked properly…fully…and deliciously.)  Once we realized our dinner time had moved up significantly we had to scramble to get our risotto done, and J was instrumental in egging me along to get his meal done on time.

One of the things we have been noticing is that J’s patience and willingness to wait have been in short supply lately.  The boy (ok, young man) who used to savor his food had been barreling through meals.  The pleasure he used to take in eating a meal was gone.

Last night he actually ate his meal slowly.  Counting between bites instead of saying “one two five” like he had been.  He put his fork down.  He took deep breaths.  He worked his way around his plate tasting everything.  It was very nice to see that he was actually present for the meal and not just because he was sitting at table with us.

When he was done with his meal, and he helped clear the table, and went downstairs to his TV room, I felt a huge sense of relief.  Instead of spending five seconds inhaling a meal that took a while to make, J had actually spent a good 20 minutes sitting with us, engaged in the event of eating together.

The night wasn’t perfect, but it was much better than we’d come to expect from all the recent upheaval.  At bedtime he was mildly confused by the fact that Dada didn’t have to go to work today, but I explained several times and it got through to him.

Since then we have managed to get J on a more cooperative groove.  He has started to wait better, to ask better, to respond better.  The fog hasn’t lifted completely, but we seem to be navigating a little bit better.

We learned something important yesterday: maybe even the world’s smallest turkey is too much turkey for the three of us.  I’m not necessarily talking about the amount of food.  I think what we’ve agreed on, after batting around our thoughts on the whole social convention thing, is that we are still buying into an idea of holidays that doesn’t necessarily work for us.  The thought of the holiday is thrilling, of course, and one gets carried away with the scents, sights, sounds and sensations that are piped through the PA systems, light displays, end-caps of store aisles.  You see the turkeys, and you travel back to that simpler time in life when your family sat around and shared the joys of the season, passed around the stuffing, the bread basket, the gravy boat.  You sort of want to have that back, until you realize that you’re in the kitchen trying to do something practical while trying to recapture something that is gone into the mists of time.

The one Thanksgiving in recent history that we seemed to agree was the best involved having brunch, and spending the afternoon in the park.  The next one in the hit-parade is the one when we did it on Sunday because it was just more leisurely that way…

We are, as it were, going our own way more and more.  Yesterday, as we returned from the movie theater, we saw several neighborhood husbands standing on their balconies, strings of Christmas lights in hand, a confused look on their faces.  We made up, as we have the habit of doing to entertain ourselves, little “thought bubbles” for them.  One said “all I want is to get this done so I can watch the game.”  Another said “she wants me to do what with these?”  Yet another: “it’ll be fun, she says.  It’s freezing out here.  Oh, she’s waving a bag of potatoes and a potato peeler at me…better get these up then!!!”  Over a pint of ice cream later in the evening we asked ourselves how committed we are to the whole lights and decorations outside the house.  “Do we even SEE those,?” Dada asks.  No, we don’t.

We took a while today taking out all of J’s Christmas ornament, garland, decoration kits out of the Big Bad Closet of Crafts, and we lined them up for him.  He was happy.  He knows this means time with us sitting around botching some supposedly simple kit that only says “requires glue,” but doesn’t mention the dragon scales, hermit tears, ground unicorn horn, or newt eyes to complete.  They NEVER come out looking the way the packaging says, and we are usually covered in paint, glue, glitter, and later on find foam dots glued to parts of our body that we didn’t even know were exposed when we put the kit together.  It is hours and hours of doing something together for “in here,” and that’s because we will see it, enjoy it, laugh over it, at it…

Do we care if the neighbors go oooh, and aaaah as they drive by?  Not really, no.  The little competitive elf inside me pricked up her elfin ears when she read there’s a neighborhood Christmas decorating contest, but then I realized how Snoopy in A Charlie Brown Christmas that really is, and I shrugged it off.  I thought at that moment that I’d just go along with my usual lights and garland, but now…

Look, it’s an extraordinary holiday season because we got used to an emotionally easier holiday season last year.  We were on top of the world without the med, and with J responding to life and everything in such a much more positive way.  I am not saying the holidays suck, but I’m saying we realize it’s not what we should be focusing on right now.

Tomorrow we’re going to buy wrapping paper for Twelve Days.  I no longer have the luxury of a whole day for wrapping while J is at school, the iTunes playing all sorts of lovely Christmas music as I sip my tea.  Now we have another new normal, and we’re making concessions.

J is not The Child whose birth the season observes, but he is the (overgrown) child we have here, now, today, tomorrow, yesterday, next week, next month, next year.  We are shifting focus.  And if there is something for which we gave heartfelt thanks yesterday it was because we CAN do that; we HAVE that chance.  And we’re taking it…

No, Ms. O’Donnell…

So it’s Thanksgiving Day and we made the conscious (and very difficult decision) to give J the whole milligram of med so we can dissipate some of the fog that is interfering with getting through to him.

Trust me, it wasn’t easy.  It wasn’t fun.  It wasn’t done lightly.

Yesterday we had two instances in which we were pretty sure he was having absence seizures, but since these are mostly manifested in children we might be mistaken.  It was as if, briefly, J wasn’t there.  Of course, maybe he is having some other issue; maybe it’s a psychiatric issue.  We just don’t really know.

The holiday, obviously, interferes with some of the things we need to do regarding the matter.  If we have learned anything over the past year it is that the medical community tends to slow down during the end of the year; unless there’s an emergency you won’t get anyone to answer your calls, e-mails, etc.  We see the psych again in three weeks.  Let’s hope there is some sort of -at least- half-formed answer to our question by then.

I don’t deny we are overwhelmed and confused.  Hopeful, of course, in the middle of all that, but wondering how to travel around this bulky bank of very dark clouds in the middle of the road.  The purpose of the med is not to make the problem go away; it is intended to help us find a more sparse accumulation of dark clouds so we can sneak in and figure out what is going on in the middle of the storm.

Still…opting for that second dose of Risperdal was not easy.

Last night, as we lay in bed looking at the ceiling fan turning, we were asking each other what is happening, and why we’re having such trouble getting through to J.  The frequent question (“how can the outside world think we’re completely unaffected by this????”) kept floating around the room.  We always ask ourselves if we just make it look “too easy,” and then we laugh and laugh.

We could try to explain, but some of it is too daunting, and some of it is no one’s business.

And then we have Rosie O’Donnell…

Holy shit, wow…

Ms. O’Donnell’s feud with Donald Trump goes back ten years.  Nasty things have been said, and Mr. Trump has done a lot of the saying.  I am not a fan of Ms. O’Donnell, but I don’t think Mr. Trump’s comments about her have been appropriate.  I am not a fan of Mr. Trump either…not of his TV show, not of his political campaign…not a fan.

Having said that…

Come on, Rosie O’Donnell!  Seriously taking to Twitter to comment on Mr. Trump’s ten year-old son?  Speculating whether he has ASD?  Posting a video?  And then claiming that parents of kids with ASD notice things that others don’t????

That may be true, Ms. O’Donnell.  We see things.  We notice things.  We read signs that others might miss because we live with them, but that doesn’t give us the right to publicly speculate about a child.  Much less, Ms. O’Donnell, does it give us the right to defend ourselves using the “but I’ve seen my child do this” argument.

Shame on you.  Shame on you a million times.

IF Mr. and Mrs. Trump have a child with ASD that is their business, not yours.  IF they are opting to maintain this in the realm of their most private life that is NOT our business, or -for that matter- YOURS.  Each family deals with their personal issues in their own way, and you have absolutely no call to take to your Twitter feed (TWITTER!!!!  One of the many current roots of all evil!) to “out” someone who might/might not be on the Spectrum.

WHAT do you think you’re doing, Ms. O’Donnell?  And why, pray tell, are you using the word “EPIDEMIC” to describe ASD?  It’s NOT catching, lady.  It isn’t some airborne virus we need to protect our children from, and it’s not going to rub off on others if they come near it.  You are, if anything, doing a disservice to people who don’t want to parade their, or their child’s, diagnosis for the world to see, judge, scrutinize, criticize, pity.

You have no more right to discuss this than you have to discuss anyone’s diarrhea.  You have no more right to discuss this than you have to speculate if a woman is pregnant because she looks “heavier,” or a person’s sexual preference because they made a hand gesture.

Stop it.  Not only stop it: APOLOGIZE.  You are focusing public attention on a young man who doesn’t want it or deserve it.  He didn’t ask to be born to those parents, and he certainly didn’t ask to have his parents be notorious for whatever reason they are notorious.  If YOU choose to make your children’s lives public (all in the name of shining a light on whatever it is that you think you’re shining a light on,) that is YOUR prerogative.

Leave Barron Trump alone.  His father?  Fair game.  His mother?  Fair game.  His sisters, brothers?  Fair game.  His in-laws?  Fair game.  They are all adults and know what a public role entails.  If Ivanka Trump wants to fill her Instagram with images of her children, that’s her choice.  If they want to make public statements about the clothes they wear, their plans to run the country, their big game hunting, that is THEIR prerogative.

Barron Trump is a child.  He should be protected from the scrutiny that you have subjected him to for your own petty, ridiculous vindictive nature.  You say your child has ASD.  Discuss THAT child’s situation.  Consider, though, that your child has a right to privacy, and you are violating that seven ways to Sunday by talking about it.  You’ve done the same to a child who is not yours, a child whose privacy is to be protected by his parents’.

You, Ms. O’Donnell, are single-handedly responsible for people sitting around googling Barron Trump autistic, and for -forevermore- there being THAT coming up when someone looks up his name.  He’s now not the President-elect’s son…he’s now -thanks to your lack of self-restraint- the President-elect’s possibly autistic son.

I’ll tell you one little thing.  People say, referring to me, “she has two kids…she has an autistic son.”  You know what?  My son has ASD, lady, but he is also my handsome son, my sweet son, my difficult son, my funny son, my music-loving son, my helps-around-the-house son, my loves-movies son, my giggly son, my tall son, my brave son…  You have labeled a child…

You, Ms. O’Donnell, are now firmly planted in my list of Assholes.  You’ve just bullied a little kid…

Shame on you!

 

Three apples and an orange…

We cannot, although it is quite evident and inevitable, believe that it is the day before Thanksgiving.  We also cannot believe that we are back on the med, and having the occasional (and of diminishing severity) meltdown with SIB, but there you have it.  It is what it is and that’s all that it is…

While things are slowing down, the SIB is still there.  More smiles during it (which is upsetting, but I understand that it’s not the same to him as it is to us,) and less frequency and violence, but it’s still there.  I now ask him if he needs to complete his ritual to his satisfaction before I replace his wrist brace.  Sometimes he needs to touch the side of his head, and sometimes he doesn’t.

The current obsession is with the bandaids.  They have to be placed just-so.  When Dada asks how my morning has gone in one of his e-mails I usually tell him “the triangulation, alignment, calibration and placement of the bandaids went well,” or “neither 10th grade Geometry nor Euclidean geometry prepared me for this morning.”  Yesterday I had to redo them immediately after being done with applying them.  The moment you realize your kid is looking at you like this…

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you know you’ve done a crappy job and you need to correct it…  Correct it I did.  Quickly.  While asking him to breathe deeply and be kind to himself.

The other day we sent an update to the psych and said “we see an improvement, but he’s still very impatient and sometimes doesn’t seem to want to stop hitting himself.”  He said it was OK to give him the full milligram of Risperdal.  We agreed that this might be wise, but decided to stave off until we felt it was inevitable.

And here we are, still on the half milligram, and doing fine.  I wouldn’t say our problem is gone, or J is fine now, but we’re working on being better.

I was messaging back and forth with my niece this morning, and she asked what -to me, anyway- sounded like a rather existential question.  When I answered it I referred to the three apples and one orange in the title of this post.  I wrote to her, in a rather long-winded (no, you wouldn’t know about me being long-winded, would you?) reply, that if you ask someone (little Timmy, I believe, was my subject) what do you get when you have three apples and someone gives you an orange.  The answer is three apples and an orange because no one says “four pieces of fruit.”

The context for that illustrative scenario was different, but the essence is the same.  Just because you put two things together doesn’t mean that you can turn them into one cohesive mass.  Medication plus J doesn’t mean a solution.  It means J is taking medication to help him be more open to certain negotiations that he is having trouble accepting in his current anxious state.

We have three apples and an orange.  Not a fruit basket.  Not four pieces of fruit.  We have three of one, and one of another.  That doesn’t mean that we won’t end up with a basket of fruit, but it means we’re not quite there yet.

And for this we are thankful.  We have three of one, and one of another.  We used to have all one kind.  We are adding and altering things to what we have.  We are working on this.  We are proactive and productive, even at a very small scale.

So off I go to season the world’s smallest turkey, and to make a well-deserved and much-needed cup of coffee to help me navigate the rest of this day.

I wish for you a safe and happy Thanksgiving with a tasty meal and many loved ones who understand your kind of gratitude, and your scale of accomplishment.  I hope you accept your apples, oranges, lemons, kiwis…whatever fruit you have in whatever proportion it is available, and eventually make a basket and say “this is not that bad…I can handle THIS.”  In the meantime, let’s be accepting of the fact that not all gratitude comes with a warm glow (unless, of course, you can count acid reflux caused by corollary anxiety,) or with a picture-perfect background.  Gratitude is about knowing that you have “the chance.”  The result is maybe still lurking, floating, skulking, hiding, traipsing, scurrying out there…but you have “the chance.”

That’s all we need right now.

Peace, people.  I am thankful I get to monologue at you, and you don’t (can’t?) throw tomatoes at me…even those, too, are fruit for my potential basket……….

 

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…