Thursday, April 29, 2010

This Is the Blog That Never Ends...

So no posts recently because in my head, I keep saying the same things over and over and over, and I've bored MYSELF so thoroughly that I'm afraid of the lawsuits that will arise if I pour it all out onto a blog page and send innocent readers into comas.

You would think, perhaps, that since I am now here, something of note had occurred, but OH! How wrong you would be!

However, on the off-chance that someone reads this stuff and actually finds it useful to know that somewhere out there in the great Blogiverse, another parent is indeed mired in the same mental muck at this point on their journey down the autism diagnosis road, I give you the word that has taken over my life:


Jesus gawdamighty, the PAPERWORK!

Now my faithful reader will know that I come from a group home background, professionally, so I am wily to the ways of forms and paper trails and documentation, O my! Even so, I am perilously close to overwhelmed by the sheer number of things to keep track of - and so, I have done what any good direct care staff person does: I made a binder.

I modeled it on the one suggested on the Autism Speaks website, in their MOST EXCELLENT 100 Day Plan, and in the course of a week, I can already tell you that in the event of a house fire, if the cat doesn't happen to be sitting directly on top of it as I gather up stuff to save, he's on his own. It's that good. (And thanks to my friend Corrine for pointing me to it!)

So now, I have a place to write down every service provider's name and info, every contact I make inquiring about something, and what follow-up it requires, and when. All Jamesy's medical reports, from immunizations to audiology screens to neuro (when we finally get it done), have a section, so I can easily lay my hands on them to make copies when I apply for the next round of whatevers. IFSPs. Evals. General correspondence. Schedules.

I added a monthly calendar section so I can see his schedule at a glance when arranging the no-fewer-than SEVEN therapy/eval appointments he is up to weekly, and then a second, separate one (stored in the clear plastic sleeve on the cover) to which I add not only HIS stuff, but all the rest of our dentist, school, pediatrician, etc appointments, so I can fail to overlap by mistake.

I have copies of all his insurance cards, and a wallet-size photo of him, and a prescription from his regular pediatrician to the developmental pediatrician. (All of these because they were required when applying for an appointment with the developmental pediatrician [APPLYING. APPLYING?! WTF??] and it seemed like a good idea to have them on hand since no doubt someone else will eventually want them too.)

Also, A nefarious subliminal trick occurred to me when getting the THIRTY PAGES of supporting documentation together for that application: His picture

goes on top.

I realize you need to know his history, and we're only doing this so we can address all his tics and 'special' behaviors... but don't forget for ONE SECOND that this is my KID, dammit. He has a face - see it? Innit cute?

And if I have to shuffle 80 godzillion papers to get you to even consider him, you can damn well remember who you're reading about when you look through them!


Sorry. My temper got away from me there for a sec.

So, anyway... yeah. Paperwork. It's making me nuts. More nuts. Contributing to the overall nuts factor. Aw, nuts!

I hate it, but it seems it will be one of the defining factors of this journey, so here I am, mom-ninja with binder-chuks, ready to battle it head on or assault it, all stealthy-like, under cover of darkness and tequila. Er... darkness.

More from the trenches after Ed, the OT eval guy, leaves us later tonight!

Tuesday, April 20, 2010

A Love Song to My Former Life

Autistics can't absorb minerals - supplement them.
WAIT! Don't over-supplement.
Autism is cured/helped/mitigated by taking doses of fish oil.
Be careful of heavy metals in fish oil. Better not use it.
Make sure he gets his vitamins.
Cut back on dairy; it makes Autistics crazed like squirrels on Starbucks. (Okay, that was my paraphrase.)
Try milk substitutes, like soy milk.
Don't use soy! It's worse than catnip for Autistic cats. (Kids. Whatever.)
Watch out for glutens. (AAAAUUUGH!! Attack of the killer bagel!!!)
Dare I say it - vaccinations? (Too late! He got his. Probably I'm a criminal or something as a result.)

Autism is connected to the digestive system.
Autism is neurological.
Autism is physical.
Autism can be improved by stimulating certain parts of the body, like the "pointer" toe for language centers.
There IS no "autism". (There is only Zuul?)
Feldenkrais! (Gesundheit!)


So these are all the things I was told just in the past two days.

It is a very VERY good thing that I am a) stubborn like a mofo and b) have had some experience in this field because let me tell you, if I were a parent fresh off the diagnosis train faced with all the conflicting info out there, my head would explode. Then we could add

Autism causes insanity!

and also

Autism creates fatal explosive inter-cranial pressure! (Wait till THAT one circles the interwebz, o boy!)

So let me stop here and say that both Jeff, the psych therapist (who was also one of the people who did the initial evals) and Bethany, the speech therapist, were lovely people, and connected very well with James. This is not particularly hard to do, since he pretty much likes everyone, and isn't one of those kids that freaks the hell out when he's pushed out of his comfort zone (Bethany was able to pick him up and snuggle him with nothing but grins in response after intentionally frustrating him to see what kind of verbalizations he would make, and Jeff had him laughing like a loon). However, it was nice to see his easy-going nature confirmed.

Both therapists used the first session mainly as a getting-to-know you time, although Jeff less so because he had already met Jamesy. Both agree that he is super-intelligent, and super-stubborn (we're calling it "inner-directed"). Both want to up their therapy from once to twice a week. (The state mandates that they start at once.) Both are encouraging, upbeat, and clearly charmed by the curly-headed rascal they are charged with helping. Both came armed with various toys, plunked themselves down on the living room floor with them, let Jamesy come to them and choose things, did lots of mimicry as they played, and were willing to let him stop to draw, which is one of his favorite things.

Overall, no complaints (besides my general unhappiness with having to do any of this in the first place, obviously). However...

... Bethany has an autistic daughter, age 6. Because Bethany has had some success with various dietary modifications, and claims that her daughter (who stopped talking at age 2) has now begun speaking again due to her Feldenkrais involvement, she is chock full o' what I am now going to call "Things You Should Absolutely Positively Do For Your Autistic Kid Unless You Shouldn't, In Which Case Nevermind But Please Take All My Advice Anyway" (instead of calling it "the usual bullshit", which while more apt, is less descriptive.)

Now if you've done any reading at ALL about autism (or seen a news report, or spoken to anyone anyplace anytime ever), you will know that no one knows what it even IS (there is no single, coherent definition), much less what causes it, or how to cure it. Certainly, some children have benefited from each of the various approaches, which I have no doubt were the brainchildren of some frustrated parents grasping for something, ANYTHING to help their kid. But if there were a therapy which worked every time, guaranteed - or even MOST of the time - people would be lined up from here to the moon to get in on it. So while I am not necessarily dismissing ANY of the approaches mentioned - or any of the 40 gadzillion I will no doubt hear in the future - I would like to take a moment to be grateful that I was in the field long enough to know to take what I hear with a grain of salt. (ACK! NO SALT!)

And meanwhile, we have so far been pleasantly surprised by the quality of the interactions with Jamesy and his therapists - and that, in the end, is all that matters.

[And before you ask, Mo... MS, CCC-SLP, TSHH. Iz gud?]

Tuesday, April 13, 2010

Hypocrisy, Thy Name Is Peachy

I'm new at this, yeah?

Now, I have a long history (I won't go so far as to say "distinguished") working with folks of all ages with all kinds of developmental disabilities. If you had asked me, pre-James, whether I could handle such a thing were it to occur in my family... I'd have given you the exact answer I gave the geneticist who asked me that question when I was pregnant with the Devil and they were concerned she might have an issue due to my "Advanced Maternal Age" (read: you're old): "HELL yes, I can 'handle' it. Who better than me?"

Oh, sure.

I'm all about the person-centered-planning, baby. I like those objectives measurable and those goals attainable. I'm meeting you where you are and respecting choice. I got your significant deviations from the mean and your projected milestones and your self-stim and your sensory integration and your facilitated communication right freakin' here. I speak Clinician, yo. That's how I roll!



Can someone please tell me, as I continue on my freshly-launched campaign to ensure that the rest of the world never sees James as anything but the person he is, how I stop measuring him against Autism? How do I stop noting, in my head, the 'normalness' (or lack thereof) of EVERY SINGLE THING this poor kid does?

Will it always have to be all about the disability?

Tuesday, April 6, 2010

Tiny Boons

So I am on a mailing list for an absolutely hysterical guy from Britain, Mil Milhouse, and every so often he publishes a newsletter that is worth waiting for no matter how long it takes to arrive. (Go to his website, here: when you are done with this blog. NOT BEFORE, or you'll never come back! You're welcome.)

Mil hates Facebook, but finally caved in and started a page called "Tiny Boons" wherein one may document those small but meaningful good things that happen during your day. (Before you get too worried about how sappy and nice that sounds, he means things like, say, finding out the chainsaw is out of gas when your demented girlfriend goes to start it up to hack away at you with it. You know - nice little things like that.) Well, today's blogtastic entry is going to ninja his name, and without remorse. Also, by the way, without the cynicism and hilarity, because, trust me, today is all about the sappy mommy moments!

:: insert pause for fetching of insulin for those with sugar issues ::

So, first: the Devil. She is sitting in her chair in the living room, watching Yo Gabba Gabba (Why, God, WHY!?! Oh, wait - she's the Devil. It all makes sense, in context...) quite contentedly and calls back to me over her shoulder, apropos of nothing, "Momma... I loves you. I loves you all day AND all night! You make my heart feel squishy."


Now a funny (peculiar, not ha-ha) thing has been happening to me for a while, and I've been hyper-aware of it since the eval/Day-of-Formal-Official-Writing-Down-and-Confirmation-of-All-My-Worst-Fears-About-Jamesy, -O- CRAP!

To wit: whenever one of the other 2 kids does some preshuss thing, ahmahgawd, a little teeny bastard of a voice in my head wonders - in a horrible stage whisper - if Jamesy will ever be able to do the same thing. And while I of course dispatch the other 10-12 people living in my head over to knock the ever-lovin' crap out of the teeny bastard immediately (followed by the ghost of my grandmother, leveling Sicilian death-curses), it's always too late; the seed has been planted. A little tiny heart twinge. Not a heartBREAK, or anything, more like a little.. heartbruise. An owie.

HATE IT. (And am I the only one who does this?)

So of course, when the Devil goes all pink unicorns and fluffy kittens on me, the Teeny Bastard chimes in practically before the words are done leaving her lips. But today, o ho! Today! TODAY I WIN! Because...

Tiny Boon #1

Although usually a depressing little loop about whether I will ever enjoy such an utterance (or even hear my name) from James begins at this point, today..


For real. Looking at me. Over and over till I responded.

::trying to not jump up and down while I type::



AND... (yes, AND!!!)...

Tiny Boon #2

... when I went dashing over to him in response, grinning like a lunatic...


I even did an experiment, and made an exaggerated frowny-face at him while I had his full attention (to which he responded with a very serious look), and then smiled again and SO DID HE!!

Yeah, yeah, he'll probably never repeat it in front of anyone, especially not an evaluator, and yeah, it's not REALLY tiny, boon-wise, but it's my blog dammit and I can call it what I want because JAMESY SMILED AT ME AND CALLED ME MAMA!!

Woo hoo!

Monday, April 5, 2010

Ode to a Breadstick

So James prefers his food small. He's not fussy about texture - he'll eat a chip, a yogurt, a banana, a chicken nugget, hot or cold, soft or crunchy, with equally reckless abandon - but he prefers the item in question to be cut or torn into pieces the size of, say, a candy corn. My personal theory is that since he inevitably crams as many of those small pieces into his mouth as humanly possible, he wants them that way to facilitate the plate-to-chipmunk-stuffed-mouth process. (His people have neither confirmed nor denied.)

One thing James does NOT like, however, is to be involved in the piece process. He prefers, thankyouverymuch, to have the staff present his comestibles pre-cut or torn, and if left with no other recourse but to take a chunk off of a spoon or fork proffered to him, he will take the item in its entirety rather than bite it into the size piece he prefers.

So the other day, the weather finally turned nice, and we embarked on one of the most dreaded quests known to mankind: Family Day Out. (Yes, there is a logical flow to this subject change. I promise.)

That's right... we all piled into the mini-van (respectfully known as the short bus around here), and headed out on an hour+ drive to Woodstock for a day of playground, woods-walks, fine food-eatery, and an assault of the mall up there, which has better stuff than ours. (Stuff = good.) There was the obligatory impromptu picnic at McDonald's when we discovered we were all starving to death and unlikely to complete the trip without immediate nugget-based nourishment, and then we arrived in Woodstock and had a spectacular good time on swings and extra-tall swirly slides (the Devil's big accomplishment) and see-saws and playing in gigantic piles of dirt (James) and somehow getting co-opted by a local t-ball team and playing a game with them (Number One.) We wandered down to one of our favorite local food establishments late in the afternoon only to find it disappointingly changed, and consoled ourselved with a leisurely meander through Target, where we acquired a kiddie pool of epic scale, and a hose to fill it with. (Hooray! Stuff!) We found the Mr. Smoothie and had frozen concoctions. We made out like bandits in the Old Navy clearance section. We spent quarters on silly rides. Life, in short, was good. No one cried. No one threw up. There was even a marked lack of whining!

And were we content with this? Did we say to ourselves, "Selves, this has been a day of lovely weather, and a remarkable failure to tantrum on anyone's part... let us away homeward before the enchantment ends?"

No. No, we did not.

Flying in the face of convention and our budget, we instead called Number One's Dad & his girlfriend, and demanded that they come have dinner with us at the local diner - to which establishment we had not been since James was about 6 months old, despite having been serious regulars before that. (They make a MEAN burger at the Liberty Diner, let me tell you...) They agreed (FOOLS!) and we all met up and received one of the warmest greetings I've ever gotten from anyone from the staff, were ushered with much fanfare to a table in our regular waitress' station, and treated like royalty for the night.

So, what a wonderful day! Amazing happiness and delightful sunshine and family bonding and stellar service, yippee! And then... IT happened.

James, who had been entertaining himself with crayons (thank you, waitress Sue) and the back of his paper placemat, reached for a breadstick his sister was about to eat. In a moment of utter parental perversity, we didn't interfere. With infinite deliberation, he grasped it firmly, slowly brought it toward his face, held it up to his eyes for a more thorough inspection, and then, in what can only be labeled an Easter miracle... took a bite.

And chewed it up. And swallowed it.

And then took ANOTHER bite.

You all can keep your screaming 2-year old maniacs and shouting senior citizens who happily inhabit the other diner tables... my kid took a real bite and ate it :)

Thursday, April 1, 2010

His Name is James

This is my son. His name is James, he is just going on two, and he has some issues. We're working on them.

This blog is dedicated to him. It may not always be about him, precisely - he has a sister (The Devil in Pink Pajamas) who tends toward the dramatic already at age 3, and a brother (Number One Son) who is amazing and crazy creative in his own right, and a father and numerous relatives and, of course, a mother just this side (or was it that side?) of sane... and all of us tend to get into things that might seem blogworthy to me, so we might show up to take over from time to time. I make no guarantees. But today we had our very first Early Intervention Services evaluation, and James became, for the first in what I know will be a very long series of times, officially and on paper, developmentally delayed.

Obviously, I knew this, or they wouldn't have been in my house.

And, hey, I didn't spend 15 years of my life working with OTHER people's developmentally delayed children not to recognize one when he's sitting in my recliner flapping his hands and hooting like a barn owl on Starbucks because.. well, just because.

And may all the gods ever imagined or ever to be help the idiot who gets in my way as I get him every service available to help him become the best, happiest James he can be.

But most of all, gods help the person who forgets that at the end of the day, he is not a diagnosis, he is not a behavior, he is not a case, case number, or even an autistic (or whatever diagnosis they eventually settle on) child. He is James. A person. He has preferences. A sense of humor. He is wily and silly and snuggly and cranky and sleepy-eyed and patient with his dumb ole mom, who can't understand that "Ahhh" means "my feet are cold" while "Ahhhh" means "Hey lady, what do I have to do to get some food around here?! I'm freakin' starving over here! Can a guy get a chicken nugget??"

My son has a name. It is not autism, it is not special needs, and it is not developmental delay. They may be his forever like his big blue eyes and his finely-honed sense of merriment when he's naughty... but they are not HIM.

And I love him. With all of it.

So Jamesy... this one's for you, from Momma. And I swear I will see to it that one day you can read it.