Confirmation, Maybe?

A while after we got the official diagnosis for Henry's FXS, and we had to explain not just his behaviors, but delays in progress to the layperson, I started harboring thoughts in the back of my mind that I sometimes wished that Henry would just be officially diagnosed with autism, just so I could stop having to explain what FXS is, how it works, and what it means.

We had a consultation with a neurologist to look into Henry's sleep patterns, and while I won't get into the utterly ridiculous suggestions this doctor had to "resolve" Henry's sleep issues, part of the paperwork involved exactly what I wrote above in the first paragraph.

A review/examination to determine if Henry is on the ASD spectrum.

I think it's a foregone conclusion, actually.  Since ASD is such a broad-ranging condition, no one person with ASD can be effectively compared to anyone else with ASD and expect to see similar results.  Henry doesn't necessarily exhibit the "typical" characteristics of an autistic person, but that's because there's really nothing "typical" about autism.

What a lot of people may think when they hear "autistic" is Dustin Hoffman's Rainman.  That's not a typical representation.  Not every person with autism looks forward to fish sticks and Judge Wapner.

We hear qualifiers like "high functioning."  That's pretty much a rationalization to say that a person with autism isn't nearly as Rainman-like, which may make those who are unfamiliar with this world a bit uncomfortable.  It's a way to reason a degree of "normal" when such "normal" is not an option.  It's how to determine how close to "normal" the person with autism is, so that it's not as uncomfortable to deal with.

To note: this is not meant as a criticism; I understand that the world of special-needs kids and adults can be rather scary to the general public, because it's a world of unfamiliarity.  As a parallel illustration, while Lori has familiarity with Japanese culture, it was a complete world-turner when we all went to Japan a few years ago and experienced the train station at rush hour.  Even going to the Outback Steakhouse that was down the street from our hotel and sitting at the bar to have a few beers was just slightly different than what we would experience here in the US.

Nevertheless, there is a recommendation to determine officially if Henry is on the spectrum.  This, to me, is a mere formality and confirmation that Henry is indeed autistic.  Of course, that also means that I have to work out how to describe it -- is he autistic, as a characteristic in the vein of being tall or half-Asian?  Does he have autism, akin to having brown hair?

At the end of the day, I think that's something I'll have to work out later.  But for now, it's just one step closer to pretty much having that one word to describe him without having to spend any additional sigh-filled effort in explaining the ins and outs of FXS.

While I do explain FXS whenever I can and at every opportunity, I read my audience and most times, I see that glazing of eyes when the attention is slipping and I'm about to lose them.  Those are the times when I'd wished I could just say "he has autism," and be done with it, because despite the controversies surrounding Autism Speaks, it has at least put autism closer to the forefront of the social consciousness such that people understand that even if they don't know what it means to be autistic, it's at least something they've heard of to understand that when we say our child has autism, or that they see that we're sporting that colored-puzzle-piece merchandise, they understand that we have a long and hard road ahead of us, even if they don't know what it'll be like.

(and that was a hell of a run-on sentence, if I do say so myself)

Point is this: people have heard of autism and as such, can display more sensitivity and tolerance toward our children's behavior.  I don't have to explain what it is, which can get exhausting (and thus making me feel like a terrible FXS advocate as a feedback loop).  I had wished for a DX of autism just so I could stop explaining all that Henry is.

It appears I may be getting this wish.

Of course, just because it's on paper doesn't mean that my son is any different.  The diagnosis doesn't change who he is or what he does.  He's still that same goof who wants to be tickled until he collapses; who tries to walk from the car whenever we got to the store, but starts to get nervous when we enter the store until he feels secure in a cart; who loves Aldi's veggie sticks; who has incredible hand-eye coordination to be able to track a rolling ball no matter how big or small it is.

What it would do, though, is give us an out.  Which was what I'd wished for earlier.  And now that it's becoming a likely reality, I'm having second thoughts.  Doubts.  I don't think I want to let the explanation go with just "he's autistic."

I think he and the FXS community deserve more than just me blowing it off because it's inconvenient for me.

The Voice Inside

At almost 2, Evie's vocabulary continues to grow slowly.  She happily babbles to herself in what sounds like words she's making up, even if they make no sense to adults.  There are variations in intonation, enunciation, and definite repeated sounds that might as well be words, even if we don't know what they mean.  She also has a few adult-perceptible words, like "appo," "shee," "awdun," and "whoa whoa."

(Apple, cheese, all done, and animals that might as well all be dogs)

I see also that her patience is sometimes a hindrance to using words.  She's lately dropped the "awdun," because she just wants out, dammit.  She's said "up" on a few occasions, but she insists more with just arms raised.  And she's learned how to throw a fit when she doesn't get what she wants or is told "no."

I want to hear what's going on Henry's head.

When the bus got home yesterday, I went down the driveway to pick him up.  I saw his face peeking out of the window of his seat, split into his wide, toothy grin where his eyes just disappear into slits.  The bus aide helped him to the stairs, and he squealed with glee.  As soon as he was in my arms, he leaned in for a head bonk (it's what we do).  He didn't even give me a chance to say good-bye to the driver or the aide.

As we made our way up the driveway, I put him down so he could walk the rest of the way.  He excitedly scampered toward the door, and waited with barely restrained happiness for me to open it.  He clambered up the steps with his hand in mine, and announced his return with his usual "AHHH!!"  He ran to the living room to play with his toys, shoes still on, and barely an acknowledgement of Mom or Obaa-chan.

Later, when my mother was gearing up to take the kids for their afternoon walk, she got the brand new double-stroller we got unfolded, and we saw Henry's face in the window of the screen door.  With his face-splitting grin, he began excitedly hopping up and down.

Henry was the embodiment of pure joy at that moment.

Once seated and belted in, he was just babbling with happiness.  But unlike Evie's babbling, Henry's babbling is just noise and syllables, no real discernible words or word-like sounds.

I want so desperately to listen to what's going on in his head and understand it.

This played out later on at dinner when he was upset.  But upset about what, we don't know.  He was clearly frustrated that we weren't clued in on what he wanted, which then turned into a negative feedback loop.  He got more upset that we couldn't fix the problem, but we didn't know what the problem was, so he kept getting more upset, which then made us frustrated and helpless.

We want so desperately to hear what's in his head.

I know he loves us and knows we're his safety net.  His teachers and even bus driver say that he says "mama" as an actual word rather than as a noise, and that it seems like a typical emotional safety blanket that kids this age use.  They asked Lori if she ever gets sick of hearing it.

I imagine that Lori's heart broke a little at that moment, because we don't hear it at home at all.  They were surprised by that.  What we hear is the nonsensical "mamamamamamamamamamama," which is more like lip or mouth exercise than actual intent to say "mama."  The only time Lori heard Henry say "mama" and mean it was when it was in absolute terror during the failed sleep study, when he was screaming and shrieking to be saved.

We want to hear what is in Henry's head because this means that he's assimilating what he's hearing.  It's just not coming back out after processing.

I'm going to take a detour for a moment, but it's in the context of an analogy as only my geek-nerd self could do in order to make a point.

In the core of a star, the chemical and physical processes result in photons.  Those photons are what result in what we call "light."  Light is mathematically and theoretically (in a scientific sense) composed of photons (which makes the whole idea of a "photon torpedo" from Star Trek a little silly at first glance...what are we going to do, shine flashlights at the Klingon fleet?!  I digress.....).  A photon is calculated to take about a million years or so following its generation in the core of the star to escape to the surface, which then takes about 8 minutes to travel to Earth in the form of visible light.

The reason it takes so long for a single photon to escape the interior of a star is because of the utter chaos of physics that occurs in a star.  Energy and gravity play havoc on the path of that photon, so it gets bounced around in its journey within that star.  And considering the mind-numbingly insane sheer size of a star, even one as small as our own yellow sun (yes, it's a smaller one, on a cosmic scale), can make the journey of a single photon a really long one.

This is how I imagine language to be in Henry's head.  He has some words and others are developing.  We know this because he understands more than what he speaks.  He comprehends.  Not just tone of voice, but the actual words.  He can differentiate meanings even in different languages (English and Japanese).  It's just that they're not returned outward from within his own stellar core...or at the very least, they're on a very long journey.

I just hope I don't have to wait a million years and eight minutes to hear them.  I want to know what's going on in my boy's head, because I imagine he's got a lot of interesting things to say....if only he could.