Rainman, continued.

So, BB has Asperger's.  He's one of the 1 in 150.  He's quirky.  But, he's also not -- at least on the surface -- readily identifiable as such.  Almost no one would walk into a room and be able to see his diagnosis (the autism specialist at the school did, but I suppose that's a good thing).  No, you'd just see a kid who was a little spacey.  Who stares a lot.  Who seems a bit out-of-sync with his surroundings.  You'd see a smart and extraordinarily insightful child who was more comfortable chatting with adults than playing with a group of children.  You'd see a child who loses every game of tag.  Who trips and falls on top of his friends,  often inadvertently hurting them.  You'd see a boy who doesn't comprehend malice.  Depending on his mood, you might see a child who's aloof and non-communicative.  His aloofness might seem a bit rude and you might silently wonder if he was ever taught any manners.  You also might see him when he's unable to stop talking about his favorite topics:  movies, video games, and roller coasters.  You might think all he does is sit in front of a screen all day.  You might see him flap;  you might not.  If you do, you might dismiss it as a weird behavior.  You might not put it all together.  Unless you Know, you will probably never know.

BB knows he's a little different.  We can't tell yet if he's really OK with that or not.  Many days, it's hard to tell if WE'RE OK with it.  We've been as honest as we feel is appropriate.  We've told him that his brain works differently than many other people's brains (have I mentioned that he also has dyslexia?).  We told him that those differences make some things harder and some things easier.  We told him we love him no matter who he is and that he will always have our love.  No matter what.  

But still, there are special diets (gluten-free, casein-free, and soy-free), reading tutors, speech therapy, social-skills groups, chiropractic adjustments, and occupational therapy.  There's a constant tension between trying to "fix" him and accepting him for who he his, quirks and all.  We want to prepare him for life outside our loving acceptance -- because, unfortunately, the rest of the world isn't always as kind as we are.  But, yet, we don't want him to feel like he needs to be "fixed".  He's beautiful and perfect just the way he is.

And then there's the rest of us -- Mr Kish and I, as well as LG.  Thankfully, LG adores and idolizes her big brother (when she's not tormenting him!).  We worry that there will come a day when she's ashamed or embarrassed by him, but we try not to borrow trouble.  We need support, Mr Kish and I, but we're not entirely sure where to get it.  We are pained when we listen to our friends gush about the accomplishments of their neurotypical children.  Our upper(ish)-middle class, well-educated demographic lends itself to overly-involved trendy parenting and high-achieving, "gifted" children.  Hell, LG is one of them -- she's headed to kindergarten in a magnet program specifically designed for "gifted" kids.  Still, though, when it comes to BB, it is painful to accept the fact that he's NOT like our friends' children.  That he's not like LG.  

So Mr Kish and I are left in a sort of no-man's land.  BB is not like many of the other kids who are "on the spectrum".  I am infinitely thankful for that.  Thankful that his challenges are not greater than they are.  Thankful that he can speak to us and tell us that he loves us.  Thankful that you probably CAN'T pick him out of a crowd.  Along with all my gratitude, though, is a sense of isolation.  While I can't relate to my friends who have neurotypical kids, I also can't relate to the parents of more severely affected children -- the kids you could easily pick out of a crowd.  I'm afraid they will look at me with disdain and wonder if I know how lucky I am.  I do, I promise I do.  But, I need someone who understands.  Who knows what a HUGE deal it is when you child has an appropriate conversation with a peer.  Who knows that these kids with mild ASDs are often overlooked, labeled as weird or misfits, but not really understood.   Who knows that aloof does not equal rude and that the occasional highly-emotional outburst is not a function of sub-par parenting. Who knows that reading deficits are not reflective of intelligence (or the amount of time we spend reading to him) and that sometimes ASD kids flap to help regulate their sensory systems.  I'd love to talk with someone who knows how hard it is to advocate for kids like BB -- to keep them from falling through the cracks.  And while I know how very lucky we are, I contend that having a child with a mild disability brings unique challenges -- challenges that parents of more profoundly disabled children can't understand.

Comments

[RaisingSmartGirls]

I can relate, sort of. My middle child is in that gray area - being highly intelligent, but having selective mutism (a form of severe social anxiety) and sensory issues. Things are improving, but she still struggles with being mute in many situations. Where she is comfortable, no one could ever guess she has problems. Where she is not, you can tell. And there is a lot of emotional/behavioral difficulties due to social communication problems. Plus anxiety overall is "invisible" to most people. No one knows that I have to talk my daughter out of her fears daily.

The beginning of the school year (8 days but who's counting) always brings an interesting "regression" of behaviors - an increase in stress and meltdowns and of course add that to an already introverted, anxious child.

I feel ya. I do. I think I'm going to add you to my blogroll, because it's hard to find parents who blog about raising kids like ours.

[EJM]

Just saw your link to this on Facebook...it's nice to know that there are others stuck a place where you know that your are lucky that the issues are minor, but the grief over what could have been is heartbreaking. I feel so guilty for it!
My oldest is typical and talented and mostly easy. My youngest is so different it seems like they'll never have anything in common. ADD (not hyper) and dyslexia are our diagnosises; pretty invisible to most, but torture to him some days.
I began homeschooling him about a year and a half ago, but when I started, it was only going to be for a couple of months - until I could find the right school. There is no exactly right school and what I've learned is that I can't and shouldn't try to fix him. God made him exactly as he should be and my job is to love him and teach him that God loves him. The rest is extra and the most incredible blessing is to see him grow in self confidence and acceptance. He used to withdrawl as soon as he came home and without the academic pressure to measure up to everyone else in the room, he is a much happier kid. And making huge progress with one-on-one instruction. And I'm no teacher! Interesting tidbit, his best friend is autistic. They love each other unconditionally and when they argue, they work it out and move on. That's a boy thing though.
Homeschooling isn't for everyone, and I'm not sure how many years we'll be able to do it, but I've learned an important lesson; I need to accept him, REALLY ACCEPT HIM, so that he can accept himself. It's harder to do than say. No more than necessary testing, tutors, doctors, etc....they can't fix him either because he's not broken.