Monday, August 18, 2014

We're all made of alphabet soup.

Home, again, Home, again.
Peppermint Chamomile Tea
Yeasty Popcorn

I'm blogging early this week because I suspect I may not get my Out Day this weekend.  Appointments, sick kiddos, that kind of thing going on...  Plus, I need to write tonight, and this is more productive - for all mankind - than getting sucked into Facebook.

And when I say, "I need to write," I mean it.  It calms my brain.  I usually have a journal at the ready, but that has fallen off lately and is too frequently interrupted during the day to be effective.  I feel the difference when I don't get to write.  I need it.  I have written without light, without a pen, using fingers upon the bedsheets, or even upon the air.

That's just how my mind works, one of its quirks...  Maybe there's a label for it.  Depression, anxiety, I know, but maybe a little OCD, too.  I know I have what they call a "ruminating" mind.  As in, I think too much, about everything, all the time.  But is there a more specific diagnosis to be made?  And how many people qualify for some term of medical distinction?

There's a hazard in finding the term that describes you.  As much as it can be comforting to validate your feelings of being abnormal, it can also become your identity.  It can limit your view of yourself, your expectations for yourself, and hinder your personal progress.  And it can do the same when others know you by your diagnosis.  Oh, that's Phil, who's autistic...

When you think about it, that's kind of like saying, Oh, that's Phil, who is thumbs...  We all have thumbs, generally speaking.  We all have brains.  We don't need to put the characteristics of each feature in front of our interactions with the person.

On the other hand, there is something to be said for having a diagnosis, for knowing the lay of the land.  Whenever you interact with anyone, you can't know exactly what you're going to get, but you can have certain reasonable expectations.  But with someone with a mental illness, you could get something drastically unexpected.  So, there's value in being able to calibrate your expectations accordingly, if you are given the opportunity.

And that's our biggest challenge with our son, Henry.  We don't have a diagnosis for his quirks, which leaves us wandering almost blind in dark territory.  To outsiders, he usually looks like a perfectly normal (and especially adorable) 4 year-old.  Even his outbursts likely strike most people as typical 4 year-old tantrums.  Often, when I try to explain his behavior, people don't take me too seriously: "Sounds like a toddler to me!"

But Henry is not quite right.

We were almost lucky that he had speech delays because it got us in the system early.  By the time of his 2-year check-up, he only used about a dozen words, though he should have had about 50 by then.  That got us a referral for an evaluation through the school system, and Henry started meeting with an early intervention teacher.

From the first day, when she showed him how to sign the word "more," his language started taking off.  Not only did he master the signed words quickly, but his spoken words increased.  He progressed so much that by his next evaluation, he didn't quite qualify for more services.  But his teacher advocated for him, saying she felt like he needed a little more help.  She knew something was still a little off.  We had spoken about autism and she said she didn't think that was it, but he was still pretty young.  As she put it, there were indicators, but there were counter-indicators.

Henry is very smart.  He picked up his alphabet and his numbers way earlier than most kids.  He likes patterns, for things to be a certain way - but only so much.  He gets obsessive about things - oh dear god, the doors!  Music and sounds are particularly appealing, we discovered.  He can become super-focused on something, or listen to the same song, or even the same sound, for extended periods of time.  Hours, if we let him.  But he can be affectionate and compassionate and will make eye-contact, unlike most autistic kids.

But how he interacts is... a little off.  He still does "parallel play" where he's playing around other kids but doesn't really play with them.  He interacts better with Oliver, but it's usually Oliver who's directing play.  The other day, a little girl from the apartment complex looked Henry square in the eye and asked, "Do you want to play with us?"  Henry didn't answer her.  He wandered away like no one was there.

[Intermission:  It's midnight... Oliver woke up... he coughed, he chatted, he had some juice, he threw up the juice, he asked for a cup of fruit... now he's curled up on the edge of the little bed waiting for Mommy to get off the computer.  This is why I don't blog from home.]

What has become most obviously "off," though, is Henry's lack of questions.  As Oliver, who will be 3 in less than three months, has become more verbose (he has always been way ahead of other kids his age), it has become apparent what Henry is not doing.  It came home for me when, as my husband went banging and cursing around the kitchen, Oliver asked me, "Is Daddy okay?  Does Daddy have a boo-boo?"  Henry doesn't do that.  He will ask if he needs permission for something - "Can I have the MobiGo?" - but I can't think of him ever asking exploratory questions like, "Where are we going?" or "Why does it do that?"

But our biggest problem is dealing with Henry's emotions.  Oliver will protest and pitch a fit for something he wants.  Henry gets hysterical.  Seriously, he looks like he's having a panic attack sometimes.  And often, he's freaking out over something like wanting me to help him with a puzzle he can already do by himself.  If I say that I have to do dishes right now, he will pull me toward the puzzle table and repeat, "No!  You have to match!" - not with a headstrong toddler look, but with a look of great anxiety.  The day before he put the puzzle together, start to finish, by himself.  But once he gets it in his mind that I need to help him, he can't move forward until I do.  Sometimes all I need to do is match two pieces and then he will take over and finish the rest on his own.  But if he's in that particular mindset, and I insist on my "no," he may likely scream and cry, or become violent and hit his brother - and he will not let it go.  He will shut down, unable to move on with the puzzle on his own, or unable to move on to some other toy.

And most disturbingly, in his nervousness, he hurts himself.  He chews his nails (I heard the audible 'snap' tonight, when he thought he saw a fly in his bed), and he will even give himself little cuts by pinching his skin with what's left of his nails.  All over his body, but especially on his fingers, there are little red sores from him doing this.

So what's wrong with him?  Autism Spectrum?  Anxiety disorder?  ADHD?  OCD?  There's a whole alphabet soup floating around him.  We just want to know what we're dealing with.

We may not be responsible for the topography of Henry's mind - he was born with that.  But the way we deal with Henry, the way we interact - whether we yell, or encourage, or soothe, and show him how to manage his strong emotions - helps to cultivate the landscape of his mind.  We are carving out roads, planting trees and far too few flowers, laying the foundations for what his mind will become.  This is true with any person, but some minds will always require special care and attention.

[Two days later: Out Day.  Mix Bakeshop.  16oz Soy Chai.]


Like I said before, while it's nice to have a diagnosis to illuminate the detour signs, the warnings - "There be dragons here!" - in the end, we have to let people chart their own course and be whoever they are going to be.  No diagnosis can decide who they are unless they - and we - let it.  After all, no "normal" person is exactly like any other "normal" person, so why would we expect someone with an alphabet soup brain to be exactly like anyone else, even someone with the same letters floating in their bowl?  And is there such a thing as a "normal" person, anyway?  I think we've all got some flavor of alphabet soup swirling around upstairs.

For my money, given his love of music and repetition, I think Henry's letters are going to end up being DJ.

Maybe DJ Spews-a-lot.... ;)

No comments:

Post a Comment