Designer Labels, redux

NOTE: I began this entry a month ago. I'm going to finish it as if it were August, and then do another one tomorrow to bring you up to date. Why? Because I can. So there!
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Ah, what a glorious thing to always be right!

NOT.

So, the visit to the Developmental Pediatrician. A swell time had by all. We rose at caffeine o'clock, stumbled into the van, and had a LOOOOONG ride, during which time James sang to me from the moment we started until the moment - several hours later - that we stopped. And he also rocked. And hooted. And threw various things! And generally was in a cheerful uproar. Apparently this getting up before roosters agrees with one of us.

We were early, and greeted by a surly receptionist who informed me, icily, that the doctor might not see me because "it is recommended that both parents attend so that the doctor may talk with one while the other watches the child, so he won't be a distraction."

"Distraction"? Dander: UP.

After informing her with no small amount of ice in my own voice that my son was a PATIENT, and the reason for the doctor having a practice to begin with, thankyouverymuch, I agreed that she should go check with the doctor to see whether this visit was going to take place after all or not. (In my head, I also suggested she check to see if she still had a job the next day, because I wanted to have her fired, publicly humiliated, and quite possibly fried in oil like the huge potato she resembled - but I held my tongue. I am the very embodiment of discretion, oh yes I am!)

So the short story is we had the visit after all, and the doctor was lovely, and we were there for HOURS (James even fell asleep in my lap as we sat on the floor and played), and he was charming and playful and did all his "things" for her, both positive and negative... and in the end, I walked out with the coveted Diagnosis on Paper. (Handwritten on office letterhead, but what the hey.)

As predicted by NostraMomus: PDD-NOS.

So what does this mean? This wonderful classification that we struggled and waited for all these months? That we all agreed would be the ultimate answer, since no other diagnosis fits?

Turns out, not a whole hell of a lot.

I have yet to apply for Social Security benefits for him, which it seems may be the only good reason to have bothered with all of this. We may or may not need the diagnosis to smooth the transition from Early Intervention to the school system - seems the district will be re-evaluating him regardless - and so far, those appear to be the only things we might conceivably have needed it for.

Oh yeah, and our peace of mind.

That.

Funny thing: operating without a 'real' diagnosis felt simultaneously reassuring, because we were Doing Something For Our Son, and disturbing, because we don't really know what's wrong, do we? I mean, we're treating symptoms but not the disease, right? Right?

Hello?

So oddly, now that we have this diagnosis, all the therapy feels somehow LESS targeted, and more 'throwing S&*^ at the wall to see what sticks'.

New Note: I lied. Evidently, I'm moving right up to now in this post. See where I did that? Slick, huh?


This despite the fact that it became increasingly evident, as end-of-summer changes in schedule made our therapy visits more and more sporadic, that James' behavior was suffering. His sleep patterns went all to hell, his rocking and flapping - which had all but disappeared - seemed to increase daily as Labor Day approached, and even though there were moments of incredible progress (imaginary play that he instigated with his sister's tea set, out of the blue; playfully feeding me a french fry one day when I was trying to feed him; his refusal to eat without his fork; and his sudden discovery of how to use a straw, relegating his bottle abruptly to 'toy i can make messes with' status and his sippy cup with built-in straw to 'must-have'; pointing to items in books correctly on demand), overall, he seemed to be losing ground in the areas that originally drove us to seek help to begin with.

Clearly, he both wanted and needed his wonderful group of pros helping him work all this stuff out, and was feeling their loss - sometimes quite keenly. And yet...

I guess, in retrospect, some foolish part of me had hoped that getting a diagnosis would mean moving ever forward and upward, firmly in control. Since I've never done that in any other part of my life, I'm not sure why I thought this would be the place where I started, but there you have it. Very mixed feelings, after all of this.

BUT: We should end with the most important thing, no? So here it is:

Fear not... it's chocolate frosting!

Designer Labels

Welcome back. Sorry for the latest delay; we've moved, and all kinds of domestic business and insanity has occurred. We've switched a bunch of therapists, and our Psych, OT and Speech folks (Jeff, Gr-beckah - as dubbed by Her Royal Highness Miss Muffet - and Rita, in order) now all come more than once a week.

And we have team consensus!

James is adorable, we all think. (So wise, these therapists.) And a conundrum. Behaviorally, he's... definitely something... but... what?

He picks up new skills like a sponge. He will now point to things in books, wave bye-bye sometimes, sign "more" a LOT, and has several times strung two words or word/signs together: most famously when he had just generally HAD it with being dragged around WalMart, and specifically HAD IT with his idiot mother, who kept cooing maternal inanities at him but who is - as he so clearly pointed out when he was finally pushed past all the limits of reasonable endurance, and was forced to shout, with great emphasis, "MO BAH!" in her face to get a damn drink - a bit dim in the what-to-do-to-solve-this-problem department.

Dear gods, was that even a sentence?

Anyway. He uses his fork with very little reminding, and is getting better with spoons. (Meaning, they stay in his hands, and sometimes even have food on them. Hey, it's an improvement!) He is getting pretty good at drinking from cups, although heaven help the fool who tries to pry his BAH out of his hands in the morning. He stacks blocks with reckless abandon, and will sometimes help you put things away. He rarely rocks or flaps these days. He never has a real tantrum, and has none of the rigidity about textures, schedules, light, noise, temperatures, or ANYTHING that is commonly associated with autism (or even his siblings)... and yet... he's just not... there's something... he doesn't...

Shit. No one knows. None of us! We all agree he's crazy-bright and sunshine-smiley and funny as hell when he giggles, which is often, and he does eye-contact and loves snuggles and what the hell do we CALL this?

So tomorrow, the long-awaited appointment with the Developmental Pediatrician. ::cue booming reverb echo:: - trician - trician -trician...

.. and supposedly, we will come out with a diagnosis. A DIAGNOSIS -osis - osis.

A diagnosis will enable me to, among other things, get him Social Security benefits, and assist me in procuring any and all services I might desire to get him, should any problems in doing so ever come up.

Which is good, right?

Right??

So, while I should be sleeping, and despite having missed a gajillion posts between then and this, I am instead feeling very put-upon by the imminent application of a label - a label I WANT, mind you, a USEFUL label - to my baby.

I know what it will be. (Jump back, Nostradamus, Momma bear is in dah HOUSE!) It will be PDD-NOS. You watch.

Why? Because N-O-S stands for "not otherwise specified", and if ever there was a kid with a pervasive developmental disorder that couldn't be specified, lawdy, this one's it.

The good doctor has been in business for 37 years doing this. She is, coincidentally, in the place I consider my spiritual home, my touchstone, where I go to recharge: Woodstock. She comes so highly recommended that it took me months to get in to see her, and I am getting up before fricking roosters to drive up there (2+ hours) just to let her ask me all the same questions I answered when I filled out the MASSIVE application (application?!) for the appointment - you remember. The one I slyly (Oh, Mom, you're so clever! How DO you do it?) put his picture on top of, so she wouldn't forget he's a somebody, not just a pile of reports, or a bunch of behaviors, or a label.

A label.

By this time tomorrow, we will have a label, and my Jamesy will be, once and for all, irrevocably, an autistic statistic. A tick on a graph. One of the crowd. A file folder in someone's office and a bunch of reports on some computers, a problem to be solved, even a success to be applauded (given how wonderfully our therapists are doing) - but no longer JUST Jamesy, who, you know, we know he's somewhere on the spectrum, but we're not sure what's up, and hey, did you see he puts his arms in his shirt all by himself now? And watch him draw a face - he adds hair! And ears!

*siiiigh*

Clearly, this post needs to end like this:


In't he cute?

BEST. DAY. EVER!

Holy crap! It's been almost a month of me saying "tomorrow, I swear I'll blog tomorrow.." - and I have about 5 half-written posts I could bore you with (and will!) - and SO much has happened, from moving to switching Speech Paths to getting an OT to, oh,jeez, all kinds of silliness...

...but...

JAMES SAID "MORE"!!

Perfectly clearly, while signing it, asking for fruit chews!

YYYYIIIIPPPPPPPPEEEEEE!!!

My non-verbal son SPOKE TO ME. SPOKE TO ME.

And for those of you somehow not grasping the miraculousness of this, it means he can.

He. Can. Talk.

DAMN RIGHT HE CAN!

No, seriously

This is what we've been doing since the last healthy post, however many millions of years ago that was.

There have been occurrences that only involved chicken soup (which we've had for dinner all week) and sneezing and coughing and body fluids peripherally... I think... maybe?

But then again, maybe not.

Today, our beloved special skills therapist showed up. Apparently she had called on Monday to reschedule to today because SHE was sick. I was at a doctor's appointment at the time, making sure the 2 boys had not caught the Devil's strep throat and other creeping crud, and although I vaguely recall being told she had canceled, I'm morally certain I didn't know she was coming today, because SHE WAS NOT ON THE CALENDAR. And as we all know, if it is NOT ON THE CALENDAR, it is NOT HAPPENING IN THIS HOUSE.

Fortunately, after one look at James zonked on the couch, a lovely view of the Devil's Coxsackie tongue and Herpe finger (What? It's only one finger!) through the screen door (sensible woman), and a brief appraisal of my unwashed, unbrushed hair and pajamas-as-daywear look, she was happy to reschedule to next week, and hightail it down the front walk while her immune system was relatively intact.

I'd be concerned about whether she'll ever be foolish brave enough to come back, but she is ON THE CALENDAR for next week, so I KNOW she will.
Uh huh.

I know it.

I - what were we talking about it? Naps?

ON IT!

Hold, Please

This blog has been interrupted by an outbreak of strep/flu/wild Botswanian Monkey rash that has rendered your faithful blogger even more insensate than usual.

A blog entry WAS, in fact, in progress on Friday, but unfortunately your faithful blogger was swept away in a mucus tsunami (You think it sounds bad? Try swimming in it!) and has only just been washed up on Strep Beach. The Devil With a Used Box of Tissues is with her, and they think they see Jamesy and Number One Son on the horizon, making gamely for shore by aiming themselves at land and coughing repeatedly.

We will rejoin Friday's blog, already in progress, when the meds have kicked in sufficiently to ensure an actual command of the English language, and an attention span to go with it.

Until then...

NAP TIME!!!

DISCLAIMER: This isn't actually about James

...but I DO mention him. Does that count?

I am hereby exercising my editorial right to hijack my own blog for the purpose of venting, thereby preventing the premature death and/or dismemberment of any number of my cohabitants here in this ever-shrinking space we call "how long till we can move?"

So. Had a nice day. Karen came, did special skills therapy with James (<--- MENTION! See it? Right there. AND details. So I'm not so bad after all. Well... until you read the rest...) And I got a play table that has been mine since childhood repainted for my daughter (because the Devil insists on fresh paint, dontcha know), and my house is as clean as it is ever going to be until I no longer inhabit it.

(WANT. TO. MOVE. NOWWWWWWWWW!!!!)

We had some nifty weird thunderstorm-ish weather that looked like it was going to be a lot worse than it was, and then a beautiful sunset, and a fine dinner prepared...

..and then Number One Son announced that he didn't feel well. Now, I am Mommy, hear me go into denial - and I am wily to the ways of 8-yr-olds presented with unwanted peas and pork chops. So he was instructed to sit down anyway, and sip his drink, and "see how he felt". He declined to eat. He asked if he could go to bed. HE TURNED DOWN A POPSICLE. Either the kid has developed a mean poker face, or he's genuinely ill.

Now while this was going on, Jamesy and the Devil were in their chairs, and Jamesy was merely picking at his food, as well. I don't know if his ear has cleared up or not, but he began whining in a way that I associate with him being in distress of some sort (versus merely being ticked off at the crappy service in this restaurant, for instance, or the quality of the news reporting on Fox), so he was dosed with children's Tylenol (GENERIC, forgawdsakes, yes I know about the recall, calm yourselves!) and finally, he nodded off in his chair.

While I tended to Number One's various needs - ginger ale, a pot in his bed (don't ask) and could he have a snuggle? - Dad was left with a James who would rouse himself long enough to cry piteously, then eventually fall back into a fitful sleep that HAD to occur on Dad or else woe unto us all. (The same Jamesy, I would like to add, who is currently jumping on the couch, giggling, and jabbering at Kai Lan. Apparently, a full recovery has been made.)

And then came American Idol.

(Here comes the real point of this post. Those with weak stomachs or who expect any discretion whatsoever in their blogger's TV viewing habits should stop reading here.)

Yes, yes, I'm pathetic and pitiable and quite possibly contemptible and almost certainly utterly bereft of taste but, dammit, I LIKE Idol. I particularly like Big Mike, and if the truth is to be told (and it IS, oh baby, IT IS), I have been waiting all week to watch his performance tonight. Granted, it's 3 minutes of pure cheese, but...

... it's 3 minutes I missed.

3 fripping minutes out of an ENTIRE FLIPPING WEEK and, no, sorry, you must be too busy catering to loud small people who fall miraculously silent ONE BRAIN-FRYING SECOND after the performance ends!

Did they cry over the judges' endless blather? (Sorry, Ellen; I promise yours is the only stuff I care to hear. I meant THEM.) Negative.

Did they cry during the wretched filler interlude with Frank Sinatra's relatives? Of course not.

Did they, in fact, make any noise whatsoever during ANY OTHER PERFORMANCE? No. No, they did not.

And so, I find myself in the ludicrous position of being PISSED (no, I mean P.I.S.S.E.D PISSED) with my beloved offspring - who are small and helpless and possibly plague-bearing, let us recall - because I missed a performance which, let's face it, who cares? And also, have you never heard of Hulu? The interwebz? BING?? It's not like I can't see the damn performance in about 354 million places the nanosecond it's done airing; but I am bent all to shit because I missed Michael singiiiiing *whine* and why can't I eeeevvver have a minute for meeeeee *bitchmoan* and oh it's so unfaaaaiiiir *teen angst flashback*

So.. um.. yeah. I had to confess. Thank you all for bearing witness to my depravity. Clearly I should be immediately taken away from my children (for their safety!) and put someplace quiet. Preferably someplace with a hot tub, blender full of margaritas, and scantily-clad serving boy with epic abs. For therapeutic purposes, of course.

What? What??

Kites and Kiddie Pools and Pals, O My!

My, what a lovely weekend we had.

Seriously.

Sunshine in abundance on Saturday, a kite festival at which James not only held the kite string (well, for a second or two, anyway), but also ate and drank and ran around and PLAYED CATCH WITH US (<--- See those caps? They mean possible milestone alert!) with an inflatable beachball and giggled and scampered and generally had a blast. Wheee!

And then Sunday, we had chillin' in the new kiddie pool, and despite the fact that if you so much as touch his feet to bathwater, he shrieks like you're dipping him in lava, he got in that pool voluntarily and stomped and sloshed and played and didn't even make a peep when his sister 'mistakenly' (this is the Devil, after all) got him in the face with a full cup of water. In point of fact, after a long pause after which we expected to hear air-raid siren-quality howling, he instead simply licked the water drips off his nose, grinned, and went about his splashy business. Much fun had by all!

Which is good, because this scheduling evals and therapists in between earaches (his), pediatricians (theirs), and dentists (ours) grows tedious already. And of course, when not blathering on nonsensically to one blog or another, I have also become one of THOSE people... You know the ones: I sit at the computer, scouring Google (and now Bing) for autism links, alternately finding myself all superior and dismissive and HAH!-I-already-knew-so-much-more-about-this-than-you,-and-I-don't-even HAVE-an-autism-website,-what's-wrong-with-you?? and then also overwhelmed and confused and panicked and worried about not happening to find the exact right combo of therapies for my non-verbal but otherwise quite bright and engaged child and dooming him to an adulthood of sub-par group home life because I'm old and stoopid and feeling a tad incoherent myself these days and I can't Google properly or even stop a run-on sentence and, oh hey! Squirrel!

Yeah.

One of them.

So the good news is, I have the coolest, most knowledgeable, supportive, wonderful group of friends EVER. Some are fellow moms, some have special needs kids, some are professionals in the field, some are just smart and concerned and funny, and all of them are keeping me - hey, I almost said "sane"! HAH! I'm such a kidder, I slay myself - focused and able to get up every day psyched to have another day with my beautiful Jamesy and to handle whatever that entails.

So, as they say in my beloved Wayne's World, I say to you all:
I love you, man!

I have no idea what this road will look like when I look back on it in 20 years, but I damn sure know who will have been on it with me. Thank you.