If you want this choice position, have a cheery disposition…

“Cheery” has been in short supply around these parts in the past few months.  We haven’t exactly been miserable, but “cheery” has been more of an effort than it really should be.  It wasn’t so much because things are bad, but rather because some aspects of what should be ordinary and commonplace had been slightly (ok, more than slightly) “out of whack.”

Behold, ladies and gentlemen, one of the unspoken miseries of aging: the failing-in-some-way-other-than-the-one-it’s-supposed-to uterus.  The saying goes that “old soldiers never die, they just fade away”.  In the case of my uterus, that old soldier wasn’t dying…it was rallying to a reveille that wasn’t being played for it at all.  Just when I thought it was finally following the plan laid out for it by nature, the darned thing would go all Jack Torrance on me…


Yes, I’ve reached the conclusion (as have the doctors) that my uterus (that most defining of all female body parts) had the obstreperous nature and characteristics of an annoying, relentless, mean man.  While other women were being visited by Aunt Flo, I was being assailed by Uncle Jack and his bloody ax.  Months of misery had turned into years, and those years were draining everyone’s patience and my well-being.


Long story short: the damn thing (yes…damn…no darned for it…DAMN) is out and good riddance.  I’ve been home for a whole week now, and have several more weeks of recovery (slow and patient…not my forte, but there you have it) ahead of me.

As you might imagine, caring for J and doing all that was required of me in that particular area of endeavor had become increasingly difficult.  Needless to say, the erratic pattern of Jack Torrance’s outbursts was making it difficult to keep my cool and maintain a certain degree of equanimity.

J was suffering by association.  His anxiety, when it peaked, was crashing into a wall of hormonal and emotional stress that didn’t bode well for either one of us.  He cannot always properly process what’s bothering him, and I sure wasn’t in the mood to do so…so we were at loggerheads (rather loud loggerheads, at that) at random moments.

Earlier this month I visited my doctor and the options were laid on the table: either we cleaned the thing out and waited out the onset of natural menopause or we went in there and, Entebbe-like, released me from my misery.

I will grant you that, perhaps, I was a little eager to evict Jack Torrance and that colored the lens through which I looked at the situation.  I said “get him out” and out he came.  It was the right decision.  A certain medical condition -known as adenomyosis- had overtaken and angered my uterus to the point of downright unbearable cantankerousness.  Even a cleansing and stern talking-to wouldn’t have solved the issue to satisfaction.

The decision to have the surgery was made seventeen days ahead of the scheduled date.  Between then and the actual day, we told no one about it.  That is: we sat on the news and shared with two neighbors (one who is a Surgical Assistant at the hospital and the other who is a nurse).  The odds that we would run into them there were pretty high…as it turned out, the Surgical Assistant was working and her sister, in fact, was working for my surgery.  The kids weren’t told.  We wanted to keep things on the down-low, and to maintain a certain degree of calm for J while we prepared the house and ourselves for the procedure and the convalescence.

The morning of, J woke up to find the bags packed and -after a brief moment of confusion- he got in line with our schedule.  This hospital was new to him, and he was going to spend the day with Dada rather than with me.  Of course, this had weighed heavily on my mind; always I am the one who waits with him, and now he and Dada would be the ones waiting.  We were a little worried, but I prepared things as best I could.

J and Dada came in to see me at pre-op, and then they sat in the waiting area.  I made sure to tell all the nurses, doctors, etc. to please address J as they explained everything that was going on.  They did a beautiful job.  J was calm and happy in spite of the obvious stress that would be built into such a situation.  By the time I was out of surgery (it took over four hours), he and Dada were tired but relieved.  I told them to go home and rest, eat and come back in the morning to take me home.

I spent the night in a small room with my own bathroom.  I experienced no pain.  I was sore (I’d only had five holes poked into my abdomen and other such tinkering), but I wasn’t clamoring for meds. I managed to sleep a bit.  I ate a meal of potatoes, meat, and vegetables, I read, I walked around (gingerly, carefully)…I worked on meeting all the criteria for release, and -come morning- I was deemed fit to come home.

We’ve been low-key since.  I can do a bit here and there, but I do rest a lot.  I sleep better with every passing night.  My appetite is slowly coming back to me.  J is happy and relaxed, and he has accepted that Dada is working from home and will be until he returns to his office on Monday.   I’m letting thing slide because I want to make sure I recover properly.  By the time I go back to the doctor near the end of April, I want to hear “good job…you’re healing as you should” rather than “you crazy woman…you don’t need to do everything and you’ve botched this…tut-tut, tsk-tsk.”

Each day J and I sit and do something:  fold shopping bags for reusing as trash bags, fold socks, work on vocabulary, do a craft.  He is being proactive about helping Dada with things he usually waits for us to do.  Even the dog is cooperating (she is gentle and sweet rather than her usual bowl-you-over-with-love self) with this period of convalescence.

My cheery disposition is returning.  I am tired from time to time but comforted by the empty space where Jack Torrance used to be.  That the biopsies came back announcing that, other than being obstreperous and aggressive, Jack Torrance was harmless (just a big ol’ bully, really) is even better news.

Always talk to your doctors.  Always ask questions.  Always think of what is best for you and yours…

I’m glad I did.  My health was affecting J and, while this is an inevitable factor in the symbiosis of parenting a disabled individual, it doesn’t need to be prolonged more than necessary IF there is a solution for it.  In putting the kid’s well-being first, I also put mine and Dada’s at the top of the list.



When life hands you lemons, skip the lemonade…

I need limoncello.  If you’ve never had limoncello, google it.  OK, that’s tantamount to saying I need alcohol…which I don’t.  I just need to do something with these darned lemons…


The trek to the Social Security office served one purpose, and here comes another letter: you’ve been overpaid.  You can appeal, or ask for a waiver.  Otherwise we’re going to take the money out of your next few checks.  That’s because you live with your parents, and they live too nicely.  If you’re going to be receiving benefits, have the good sense to live like you need them…or have your parents live like you need them.

Yes, ladies and gentlemen, once more “we live too nice.”  Never you mind that we have only two windows, three sliding glass doors, and cannot go out because people let their dogs run rampant.  Never you mind that we have to take our trash to the dumpster, and the mail doesn’t come to our door unless it’s a delivery that requires signature.  Never you mind that “luxury” is a throwaway word…we pay too much for this place, and we know it.  Now, it seems, J doesn’t pay enough…

It doesn’t help that I don’t feel well.  Let’s chalk it up to menopause and let it go at that.  I go back to the doctor tomorrow, and we’ll see what she says.  Right now it’s a major impediment to my daily life; I am not fond of having to stop three times while climbing a flight of steps.  I am not fond of being told I’m profoundly anemic, being given pills that resemble shotgun shells, and STILL feeling like crap.

So back I go, and hope that this is a matter that can be resolved with a minimum of fuss because, surprise surprise, J is the priority here, and -like many other parents in the same situation- we don’t have J-care coming out of our ears.

That’s my rant today…

Limoncello would totally drain me.  Lemonade it will have to be…

An unexpected turn of events…

It might be nothing, or it might be something.  We won’t know for a couple of days yet, but we are -as the fact that I am mentioning it might hint to all of you- keeping in mind that we might have one more thing to work on…

J had his physical yesterday, and a short appointment became a longer, more complicated one.  His blood pressure was high-enough that it warranted double-checking (the first time was done by a student doing her practice.)  We ended up what was a rather anxiety-riddled (for J) encounter with the doctor with an EKG and a chest X-ray.

The purpose of the whole appointment was to clear him for surgery later this month, and now we wait for the specialists to determine if we need to scrap that idea, or if we need to dig deeper, or if this was just a misreading, or what.

One of the things that warranted extra attention might/might not be an effect of the long-term use of the Risperdal, and since J had used it for five solid years (albeit at a low dose) and spent some time off it before it was restarted, that could be part of the issue.  The other issue seems to be unrelated to the med, and might require a more direct evaluation by a specialist.

The next 36 hours will not be easy to twiddle our thumbs through, wouldn’t you agree?  Why is it that you can hear if Beyonce is pregnant and see proof of it all over the world in ten seconds flat, but waiting for a specialist to review your son’s EKG takes about two days?  Ah…because the first is not something that has anything to do with your child’s health, your peace of mind, the state of the modern world, social justice, or anything important.  What matters takes longer, ages you, robs you of sleep, and makes you go back to peeking in on the kid even though he is an adult who should no longer require that much attention.

But, of course, what I see every time I log on to my computer is Beyonce with a veil, flowers, whatever, and no e-mail from the doctor.  When the phone rings it’s the same pre-recorded message from Andre (calling from six or seven different area codes, naturally) asking me to donate to a fake (I checked) charity organization.  I still run to the phone in case it’s the doctor, and -being a middle-aged woman who hasn’t really got used to her bifocals- I don’t really look at the Caller ID, or wait for Robot Ernestine to tell me that number that’s calling.  (That’s a reference to a Lily Tomlin character…


I know you’re not as old as I am, but feel compelled to use these little things to keep my brain from getting too serious…)

Maybe his blood pressure was up because he was anxious about the appointment.  But the EKG noticed something that shouldn’t work the way it does.  Of course, a primary care physician has to consult with a cardiologist, and then we go from there.  His labs indicate that his red blood cell count is higher than it should be, and that has nothing to do with the pill he takes, but a hematologist has to review the results and then we go from there.  So we are on deck to depart in different directions, but we don’t yet have a ticket…how’s that?

It took a while to get him to give in to all the poking and prodding.  I had to negotiate, be firm, persuade, cajole, beg, and be firm again.  In the end we got it all done, but Dada came to join us at the doctor’s office in case things got testy.  Once we were done with the medical aspect of our excursion, I treated J to shopping for his birthday.

We have more train tracks than space, people.  And, if I am good at reading my son’s body language, we need more.  This might require disassembling and reassembling the whole village.  It might also involve moving furniture.  Considering that the cold weather has returned and we’re not likely to go anywhere for the next couple of days, this is a productive activity to be engaged in, and if Dada helps J with the new Lego cabin-in-the-woods, we will have yet another building for our little community.

These are the thoughts, concerns, preoccupations, tasks, ideas that presently engage our attention.  J is mildly moody today because he got, to top all other injustices heaped on him yesterday, his flu shot.  His arm, obviously, will not be tennis- (or laundry-, or help-mother-with-chores-) ready until tomorrow, but it’s a small price to pay.  I know he’s recovering still from how overwhelmed he was yesterday, and am giving him space.

Yes, I still go in there and -while lip-syncing to Zero to Hero from Hercules– I check in on him.  Yes, I still go squeeze him and hug him, and give him fish kisses that he mock-rejects until he starts giggling and asking for more.  Yes, I have the phone next to me…and my reading glasses perched precariously on the tip of my nose to read the screen if I have time.

I am well-aware that there are far worse things parents have to confront when it comes to their children’s health.  I don’t think our particular situation is extraordinary or worthy of more attention and empathy.  I know this might pass, or not.  I do know with certainty that, should it not be “nothing,” we will deal with it…

It’s the waiting, see?  It’s the not-knowing.  It’s the same thing I used to tell the kids: when you’re scared of something, find out its name…if it doesn’t have one, give it one.  Things are less scary when you know what they are…when you can call them by a name, and say ‘well, screw you…so-and-so…’  The first time TGG watched M. Night Shyamalan’s  Signs he was tremendously scared…until he saw the monster.  It was a tangible thing then, and -let’s face it- kinda silly-looking.  He still wanted us to make sure it wasn’t hiding in the bushes outside his bedroom window in our first-floor apartment in Anaheim, but he didn’t feel as overwhelmed as he did when he didn’t know what it looked like.  He was no longer uncertain of its appearance…he knew what he needed to look for to see if it really was there.

And that’s all we want.  We want to know.  Because when you know, well, it is not that you don’t worry, but you know WHAT you are worried about, and WHAT can be done to address it…and isn’t that more productive?



The patience of J…

I have to say, my friends, that we are impressed with our son.  He has, somehow, managed to learn how to patiently wait while one or another of his parents runs endless errands.  Yesterday it was my grand tour of doctors’ offices, and J spent the morning with Dada, running errands and getting a treat by having a sit-down breakfast at a diner, and going to the library.  The rest of the morning was rather dull; it included going to pay taxes, and stopping by Dada’s office.  It was almost noon when we arrived at my last appointment.  J waited patiently, and Dada dozed off next to him.

The morning, after a brief eruption involving J’s confusion about when his sitters will be coming over to cook dinner for him, went smoothly.  We understand that J wants to hang out with people closer to him in age, but insisting on seeing them Tuesday when they can come on Wednesday isn’t going to make things easier for anyone.  So we had a brief, and intense, back and forth about this, but we managed to make it through unscathed.  (And my blood pressure was actually quite nice when measured at the first doctor’s office, and positively picture-worthy at the second.)

The rest of the day went by quietly.  Dada returned to work, J relaxed in his TV room, and I fell asleep on the couch until J gently nudged me because his ESP (or his hypersensitive hearing) told him the timer for his afternoon snack had arrived.  The only out-of-the-ordinary activity was his desire to get his band-aids on, but I know that was because a) he’d been upset about the sitters being scheduled for the next night, and b) it had been a long morning.

Today he is happy.  He was up very early yesterday (because he knew we were going to the doctors,) but today he was up a little later and happily went back to bed when I said “we’re just going to have coffee so Dada can go to work.”  Big smile, thumbs up, lights out…  He didn’t emerge until nearly eight.

Of course, after having enough blood drawn to alarm the biggest chicken shit that ever lived (namely me!,) the doctor ran all sorts of tests from every angle possible.  The conclusion?  Ah, my friends…it’s fibromyalgia.  Thank goodness it’s not SLE, or MS, or MG, or RA, or ALS…not that the pain I’m often in isn’t an absolute mess for me, but I can deal with this.

I am not now, nor have I ever been, a “pill” person.  It’s not that I don’t love medical science.  Au contraire, my friends…I trust doctors.  Some doctors, of course, are better than others, and they actually take the time to listen to what is going on, and why you’re concerned.  Other doctors are a little less invested, and it’s harder to communicate with them.  I got lucky this time around, and they are being very exhaustive about everything they’re checking.

For starters, the iron level in my blood is quite alarming.  Or it WAS before I started taking iron supplements twice a day.  When I say “alarming” I mean “the specialist called the clinic so my PCP would see me immediately!”  They’re poking me everywhere.  No stone is being left unturned…no part of my body is being ignored.  The anemia was bad enough that they have to rule out internal bleeding so they’re doing every test imaginable to determine if that’s a problem.  By mid-October we will know if there are any major issues that should be surgically addressed.

In the meantime, we keep going.  I take the iron.  I eat well.  I exercise, and I go about my business.  I’ve been told, quite kindly by a doctor closer to me in age, that I need to be nicer to myself.  I could tell she wasn’t scolding me.  I could tell she knows.  She knows about J.  She told me that fibromyalgia is not uncommon among primary caregivers for elderly parents, sick spouses, disabled children.  She told me that we often put everyone else’s needs ahead of our own, and our bodies seem to hyper-react to this.  There are pills, she said, but you don’t look like a pill person, and I think you want to work on making it better through other means.

She’s right.  This thing (that, thankfully, now has a name) will stick around for a very long time, and I have to learn how to deal with it as best suits our situation rather than try to hide it behind a pill.  Maybe, somewhere down the line, that will change, but for now this is the way it goes.

I will get my exercise when J gets his exercise, and I will take my breaks while J relaxes.  I will stop doing EVERYTHING as quickly as I can, and I will focus on doing what I can when it’s reasonable.  I will take walks, read, do the chores, work with J on the things that J needs to work on, and let J do what he wants to do independently.  Dada and I want to get old.  We are no longer young, but we are not “old” yet…and we want to make sure we transition into being elderly in the best way possible.

Oh, it’s not going to be easy.  I don’t think I’m wired for concerted idleness.  I grew up among women who would sit quietly doing other chores as one of them read the paper out loud.  The household of my childhood was a household of productivity that, to the hustle and bustle of the outside world, looked slow and dull.  I don’t have to move a mountain a day, but I am used to constant activity that yields significant results without creating a whirlwind of noise and chaos.

I will try to be better.  I have promised myself this.  I want to feel better.  I really do.

So…here we go.  Let’s be nicer to ourselves.  We DO do a lot.  And J, who has learned patience, can maybe help me learn that I have to be patient with myself when I cannot do all I would like to…

It keeps you (sorta) running…

J isn’t an athletic sort.  I think anyone who sees his hefty frame, and watches him walk (gambol?) to the mailbox can tell that he’s more awkward than not.  His toes turn slightly in, and he doesn’t necessarily keep pace with anyone who walks with him.  Neither can anyone keep pace with him.  There’s a bit of a skip, and a bit of a sway.  He looks joyful when he’s walking, but he doesn’t look athletic.

J only actually runs (the proper definition of “run”) when there’s some sort of thing that freaks him out; dragonflies, moths, butterflies, dogs, birds, or any other imagined threat will make him break into a trot, canter or gallop.  There isn’t, let’s face it, a single chance in this world that he will ever excel in track-and-field events.  He cannot keep up a proper pace, and his breathing is laced with laughter and humming.  He sometimes runs out of breath and coughs, all while smiling broadly and laughing.

J running is reminiscent of the screaming boy in Robin Hood: Men In Tights, or Phoebe Buffay jogging in Friends.

As you all know, if you’ve been reading this, J is a fan of using his elliptical machine while watching musicals.  I have to leave the garage because this is a thing he likes to do by himself.  Whether he’s watching Guys and Dolls, The Sound of Music, My Fair LadyOklahoma!, Gigi, South Pacific, or The King and I, I am not allowed to burst in and sing while he’s working out.  I get a firm (but broadly smiling) BYE!  While out on our walks, I am his personal jukebox, and I take (of course) requests, but while he’s exercising…nope…not allowed.

J alternates his elliptical machine workout with his Wii Fit.  This, my friends, has been tricky.  A) The Wii Fit isn’t smart enough to know that it’s dealing with a person who doesn’t understand some of the instructions, B) J has trouble fulfilling some of the requirements of the correct form for the exercises, and C) running was something we had to do with him whether we wanted to or not.

Ah, yes…aging is not easy, friends.  Aging after you were an extremely active youth who had very little respect for all the fine mechanisms within one’s body is a pain in the ass.  Our knees (oh, our knees!) creak, crack, snap, squeak, and make us yelp.  There are days that, as with life in general, easier than others.  On those days, we are as bouncy, flouncy, pouncy, trouncy as Tigger himself.  Other days are laced with groaning and dread at the thought of running.

It was on such a day, not that long ago, that J insisted on running with the Wii Fit, and I had to accept that, unless the Wii Fit was the thing to use, exercising wouldn’t happen.  After slathering myself with Tiger Balm (which promises to become the fragrance that my body exudes as I age further) I told J “we’re going to figure out how to run with this thing.”

When I say “figure out how to run” I really mean it.  J, left to his own devices, will get the Mii to stand there while the clock keeps time, and every other Mii in Wii Fit Island passes him while looking over a shoulder.  So teaching J to “run” (something we all basically take for granted) had to be done.  Stability, something to anchor him, was the key.  The first time (after the Tiger Balm and some Tylenol,) I ran next to him as he held on to…drumroll, please…a stepladder!

Look, it’s not the most gracious running you’ve ever seen.  It’s nowhere near a cheetah, a gazelle, or Usain Bolt.  The pace continues to be choppy and less than consistent, but now J runs with the Wii Fit, and he listens to his music while watching his Mii being waved at by his relatives’ Miis.  The musical selections are eclectic: some days he starts out with Lou Bega’s Mambo No. 5, and works his way through Christina Aguilera’s What a Girl Wants, and sometimes he’s bouncing around to Todd Rundgren, The Spice Girls (don’t tell him I told you that,) Beck, The Cars…  He started running for five minutes, and now he’s up to 30 minutes.  He covers about five miles in that time.  He sweats and drinks lots of water.  He laughs as I do the chores in the kitchen and dining room, or take care of the plants in the driveway.

Like I said: not the most elegant runner in the planet, but he works at being fit.  He knows he’s doing better than we (the old, creaky people) are doing in that department.  He actually stands on the doorway and giggles when he sees us doing our run in the evening before we cook dinner.  He peeks in on us, and shakes his head as if saying “that’s all you’ve got???  HA!”  And off he goes to set the table for dinner, or to get things lined up for dinner prep.  J will never be thin, or graceful.  J will always go into interpretive dance when telling me if he wants to do the elliptical or the Wii Fit.  Saying RUN sounds more like “WUHN,” but I can tell from his arm and leg movements what he means: expansive back and forth with deeply bent knees means elliptical and musical, and a quick back and forth of close-to-the-chest arms, and tiny, quick steps means Wii Fit and iPod.

We are, like just about everyone else on the planet, following the Olympics, but not with the TV…we know who has medaled by reading the news and following the medal count.  We know the greatest athletes in the world are out there achieving great things.   And then there’s Robel Kiros Habte, the Ethiopian swimmer who has received attention for being the least Michael Phelps‘-like swimmer in the competition.  Like Florence Foster Jenkins, he is probably the best example of doing what you do because you love it, because you want to, because you have a right to be there with everyone else.

Not everyone will live up to what they see in Michael Phelps.  THAT is why he IS Michael Phelps.  How long did it take for Michael Phelps to outdo Mark Spitz?  The thing is that the chubby kid, the uncoordinated kid, the awkward kid, the clumsy kid, the asthmatic kid, the kid who is afraid of water have as much right to dream, and maybe their dream won’t be to BE Michael Phelps, but rather to BE there, too.

So, yeah, J runs…sort of.  He doesn’t win medals outside of our home, our garage, our milieu (limited as it is.)  But he runs.  He didn’t before.  He does now.  You do what it takes, and you should be thrilled when it works out.  I know we are.

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…



Little pitchers and all that…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This goes totally counter to my plans for Autism Awareness Day…

Yesterday was not a particularly stellar.  While I don’t hold much hope for a magical birthday (opting to generally ignore the day and feel totally awkward about any degree of attention foisted at me on the day,) I was sort of chomping at the bit for April 2nd, and for April in general.  It is, after all, the one day/month of the year when you will see a steady stream of attention for this particular sector of the population.  Blue lightbulbs were found in the place where I’d left myself a reminder they’d be stored.  My Doctor Who t-shirt was clean and ready to be worn (it reads The Impossible Girl, but I think of it as more of as “The Tries to Tackle The Impossible Girl”.)  Dada left for work wearing blue.  J decided to buck a trend and wore his “NeuroDiversity” t-shirt with a brain nicely emblazoned on his chest.  Wrong color, but right message. It’s a small thing (in the great scheme of things,) but it’s something we DO.

And then I went to the mailbox.

I’m pretty sure I’ve mentioned before that out health insurance provider probably has my number flagged.  There’s a reason for this, of course, and the reason is an unwillingness to listen on the part of customer service reps I’ve spoken to in the past.  The reason I know my number is flagged is because I now get to speak to patient, well-informed, helpful employees who sound like they’ve had hostage negotiation training.  Yesterday’s phone call was merely to confirm the suspicion that often strikes me when I open insurance company letters: J has been a victim of incorrect coding.  And, as has often happened in the past, that is what it was.  The hostage negotiator customer service representative explained that the labs J recently had done weren’t being covered (to the tune of 470 dollars and one cent) because the doctor had them coded under J’s primary diagnosis of Autism.

I let out a long, heartfelt sigh.  Then I asked the customer service rep how it made sense that drawing blood for lipid, metabolic and a hemoglobin test made any sense as being related to Autism.  She said “they don’t.  You need to call the doctor and straighten this out.”  I thanked her, wished her a happy Easter, and called Dada with the news.  He reacted with the same level of frustration I was feeling.

The truth is that a lot of doctors (not all of them, but a lot of them) are too focused on getting you in and out of there to see the next person in their seemingly-interminable list of appointments for each day.  I can understand that this is overwhelming, and that the demands put on residents at teaching hospitals are pretty rough.  My cousin is currently finishing her first year and she is pretty much barely functional.  A medical residency is a test of your knowledge and of your mettle; they want to know if you have the right stuff to do the job day in and day out.  You have to update charts, study for tests, go on rounds, absorb information, work long hours…and people sort of blend one into the other until you know the chart but you’re not (necessarily) focusing on the person.

I remember this doctor.  He did the basics and then was done.  I tried to explain that J has lost a significant amount of weight (we’re holding at under 230 now…) and that his diet has changed for the better, that he’s working out regularly, and so on and so forth.  I got a lot of yeah, yeah, yeah, and then we were done with some labs ordered and a “see you in six months.”  The flu vaccine was administered, and we came home.  I didn’t feel like we’d been to the doctor so much as we’d waved at him from the bus as we drove by, but the guy was congenial enough and the nurses made up for the whole yeah, yeah, yeah attitude.  He wasn’t rude.  He was just…pretty sure that this was all cut and dried.

The first letter from the insurance company related to this visit said the appointment wasn’t covered.  I called about it and they said “well, because his diagnosis is Autism.”  I explained he’d been in for his annual physical and, binder in hand, I took them over the history of J going for his physical at the same time of the year since we moved here.  They looked at his file and, yes, I was right.  “Call them.  They coded it wrong.”  Call was made, and issue was resolved.  And then came the labs…

The concept of comorbidity is not lost on me.  I know that Autism has many medical conditions that somehow appear in its wake.  Are they caused by the Autism?  No, not really.  Are they more frequently present (or documented) in people who happen to be autistic?  Yeah, of course.  Of course, all the documentation regarding this is the result of several people in different places noticing that there are certain patterns that are repeated in patients that share signs/symptoms/diagnoses.  Take, for example, J’s possible case of psoriasis.  Go to Google and you will find an abundance of material relating one thing to the other.

I know (seriously KNOW) that my son is firmly planted in the Autism Spectrum.  I have absolutely NO doubt that he is autistic, and that this is an important medical factor for him for the rest of his life.  Ask me, please, when was the last time he saw a medical doctor for his Autism?  Does J’s Autism figure into the way we approach any medical issues?  Of course it does!  Does J’s Autism figure into any conditions he might develop in other areas of his body?  Possibly!  I don’t think J’s possible psoriasis is a result of his Autism because other people in my family have had it, and I’m more inclined to believe that -hey!- the hereditary factor that is often cited in studies conflated with other factors that are triggers for psoriasis.

J’s Primary Care Physician doesn’t treat J’s Autism.  J’s Primary Care Physician has to take J’s Autism into consideration so that he/she can provide the proper level of care based on J’s needs.  When I take J to the doctor to have his physical health checked, the fact that he is autistic is only part of who he is as a patient.  An important part, yes, but not the part that the doctor is palpating, testing, listening to; while J is autistic, his heart, lungs, liver, kidneys, corneas and ears are merely human of the garden variety kind.  His Autism plays a part in how he treats his body, and what medications he’s on, but it’s not what the doctor is looking at/for when we go in for an annual check-up.  We go to his psychiatrist for med management, and the labs reflect how the medication affects J’s organs, and the PCP focuses on that, not on how the meds affect his mind.

It’s a trivial issue.  Someone read J’s file and determined that because he’s autistic that’s all there is to him medically.  The truth of the matter is that medical coding is a complete and utter mess that causes a great deal of problems under the guise of improving efficiency.  I don’t argue the “he’s autistic” label, but there should be a little more care exercised by the doctor when he/she is determining what their job is in relation to that patient sitting across from them.  What is the doctor actually going to focus ON?  What is the doctor actually looking AT?  If you reduce the patient to his/her disability…well, it sucks.  You’re going to end up making a mistake that can be corrected, but that brings yet another hassle to people who have other (bigger, fatter, juicier) fish to fry.  When Dada or I have to take time away from our main jobs (whether at home or at the office) to make a call or write an e-mail asking WHY things have been coded in that way.

Yes, yes…we all want there to be more awareness about what Autism IS, and what it DOES to individuals and their families.  My blue bulb (which, by the way, didn’t shine last night because it was gone by the time I left for the grocery store at 5 P.M….don’t ask) doesn’t mean “look at this home of an autistic individual.”  What we are trying to say with our blue bulbs, blue clothes, blue shoes, blue ribbons, blue nail polish is that there are many of us, and it’s a big deal in our lives that that blue is necessary.  Everyone KNOWS Autism is out there, but not everyone understands how it trickles into everything.  What is even worse is that sometimes the Autism overrides everything else, and we are reduced to extrait d’autisme.  Maybe all parents of special needs individuals feel like they’re eventually reduced into an essence, an extract of their child’s diagnosis?

We all want doctors, teachers, nurses, waitresses, neighbors, strangers, cashiers to look past the Thing that makes our kids “different” and to understand that there’s more to them that they are encountering when we stand/sit across from them.  Getting that one little number on a medical record right is a step in the right direction.

You can talk to me…in fact, you SHOULD…

I wouldn’t call the past few weeks uninteresting, but they haven’t been worth writing about at length.  J is doing well, and the weather is improving; we have had sunny, warm days, and we have had days when we wonder if winter will ever take its leave of us.

The only items of note are a small kerfuffle that resulted from asking how J hurt his hand late on a Friday afternoon.  The kid came up to me, after we’d arrived at home from the school bus drop-off, and handed me Neosporin and a band-aid.  His hand was mildly swollen, looked bruised, and had two areas that looked like a puncture and a popped blister.  Since J couldn’t explain, I sent a text message with a picture of his hand.  It was all very straight-forward: did you see this?  Do you know how it might have happened?

I went directly to the teacher because J wears his gloves on the bus (it was still cold) and the bus driver and aide (obviously enough to me) would not know.  Since there was swelling and I wasn’t sure if it had been a friction burn or a bug bite, we took J to the Urgent Care where they told us “it looks like trauma, but just in case it’s a burn or a bug bite, let’s give him an antibiotic.”  I informed the teacher of this, and then I said “you know, he used to hit his head, and bite his hand.  Perhaps, when no one is looking, he did one of those.”

Fast-forward to mid-morning Tuesday when the bus driver calls me to ask “if we’re OK.”  Yeah, sure…why????  Well, she tells me, an aide at the school told her that “J’s hand didn’t get hurt here so it had to have happened on the bus!”  She explained that he had been perfectly fine, in fact rather jolly, on Friday and that she hadn’t noticed anything on his hand.  I told her that I didn’t expect she would have because he was wearing his gloves, and I didn’t notice anything until he came downstairs armed with his own version of first-aid assistance.  I explained that I didn’t feel compelled to call her because of this, and I’d simply asked so I could better inform Urgent Care.

The person who started the gossip ball rolling was the usual suspect.  She always does this.  It upset me enough that I asked the teacher why this was made into an accusatory question when, in fact, all I had a desire to know was if anyone had seen how it happened.  She had asked an aide who must’ve told everyone else, and the person who usually goes for the gossip factor decided to take action.  “I didn’t ask the bus driver because of the gloves,” I wrote ” and because if I ask the bus driver if anything happened at school I’m the one who’s engaging in gossip.”  I explained that I don’t appreciate that type of behavior.  If an aide thinks I’m accusing, please, direct them to me and I will clarify.  “Wouldn’t you guys want to know where an injury J has comes from if he shows up at school with a blister, a bruise, what looks like a bug bite, and swelling?  And what if I took umbrage at this???”

The teacher understood what I meant, and I appreciate the position she’s in and how she cannot control certain people.  I was sorry I snapped at her, but I don’t like having my communication with others tainted because someone feels defensive about a question that should be absolutely acceptable.  If your child comes home and is hurt, sick, etc. you should be able to ask “hey, did something happen?” without people assuming that you’re saying it’s their fault.  I always ask “how was your day?,” and very seldom do I get an answer because J is J and that’s part of what his everyday life is all about.  It’s not going to stop me from asking because it’s my job.

I make a habit of letting the teacher know if there has been some major disruption to J’s routine that might affect the way he behaves in class: if he didn’t sleep, if he was not feeling well, if there was no power, if he was anxious.  I do this because I know I serve a population of one and I can dedicate myself body and soul to comforting him throughout the time that he is with me, and that she serves a much larger population and doesn’t have the ability to go one-on-one every single time it’s needed.  It’s a courtesy I extend; if you know the child (in this case the grown-up) is having a rough time for X or Y reason, you are more alert to the possibility of a meltdown, a tantrum, a crying fit, etc.  When J is wearing a bandage or is taking medication, I explain why.  I’m not covering my ass, but I want to make sure that they know “something” is up…

So late last week I got to send a message explaining why J might be upset.  As I was brushing his hair early Friday morning, J suddenly yelped and started bleeding…profusely.  Of course, a very controlled panic ensued and I called TGG to come help.  Dada was away on a business trip and TGG was in charge of dropping J off at the bus.  “Scalps bleed a lot more than one expects,” he said as he struggled to find things in the First-Aid Closet.  I took over the acquisition of supplies while TGG checked J’s scalp and soothed his baby brother’s nerves.

We cleaned the area up, and TGG mentioned that the night before he’d notice thick scales on that area of J’s scalp.  Because at that particular moment Dada had called because he was having trouble with the airline for his return ticket, we all got distracted and he forgot to mention it.  I said I’d noticed small red patches in the back of J’s head, camouflaged by his hair.  We checked the rest of his scalp and found very small areas of white scaling and what felt like thin ridges when we palpated.

J’s styling products were hydrogen peroxide and Neosporin, and I explained to the teacher what had happened.  After googling profusely, and calling my cousin the doctor, we reached the conclusion that J very likely has psoriasis…oh, joy!  You wouldn’t believe how many papers are out there about the Autism-Psoriasis link…

Until the doctor sees him, we’re shampooing with the appropriate product.  I let the teacher know because J was bound to be upset about the Chips Ahoy-sized patch of drying blood on his scalp.  It’s what one does…share information without prejudice or fear.