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

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

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

All this sans Risperdal…

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

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

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

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

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

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

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

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

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

 

 

Crashing and burning our way through the Twelve Days…

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

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

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

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

So far, so good.

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Tis Christmastime…

and we have miles to go before we sleep…

 

 

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.