fairness

Sometimes I wonder what is fair for my child in terms of explaining his disability.  Should I just tell people?  Or should I just let him be who is, and then let them wonder?  Part of me wants to do both, but usually I just inevitably say nothing and hope for the best.  I'm way past making excuses for his behavior, and I have the luxury of doing so because he is still a young child.  Not that I'm fearful for the future (Well, obviously I am a tiny bit.  I doubt that you'd find any parent who isn't at least a little fearful.), but I know that there will be a time in our future where people will start to notice that he's a bit different.  People do notice now, of course, but most people can't quite put their finger on it since his language skills have progressed so nicely.  So I never really know what the best answer is when we meet new people.  I'm always thinking in my heart that the best answer is that he's special, but that has such a bad connotation because people use that to mean "slow."  Benjamin is most emphatically not slow.  Neurotypical learning impaired, yes.  Slow, no.  Special?  Most definitely.

(as I'm being backwards bear-hugged)

Socialization?

So Benjamin had his yearly checkup with his developmental doctor a few weeks ago.  All is well- in fact, we don't have to go back for two years unless we have issues arise before then.  The interesting part of the visit was that the doctor was surprised that we were homeschooling this year.  (He is still in pre-k, just FYI.)  Her concern was that he needed to be in a group for socialization.  Why do all doctors think that this is the best choice for children with Autism?  What skills are we actually teaching by this so-called socialization?  Children in school are really only permitted to socialize in lunch (if they're uber quiet) and at recess (which is waning by the minute in every school around the nation).  I don't understand this mass socialization that is supposed to help my child learn how to relate to other people later in life.  Do we as adults socialize in groups of 8-30 on a regular basis?  And I'm saying 8 as the minimum number of children in a class, although in reality the number is much more generous than that in almost all classes.  I never understood this concept of mass socialization as it does not encourage real friendships, but rather fleeting conversations that never amount to anything but getting invited to three thousand birthday parties where the parents are forced to stand around and make small talk and referee the children from each other.  Because honestly, most parents of children have nothing in common (or so they think) with each other other than the fact that their children are in the same class.  Very few people actually want to befriend other parents in the classroom.  They want to live their busy lives, keep the friends they have, and leave it at that.  (I'm not saying that is a terrible thing, but rather just reality.)  But what this leaves us with are forced friendships amongst our children that never amount to much of anything.  So why is this socialization at SCHOOL so important?  I thought that school was primarily for learning, and isn't that exactly why children tend to get into trouble at school?  For socializing when they're supposed to be paying attention in class?  This concept just escapes me.

I just smiled and said yes, he is properly socialized and has real friends whose parents I know and love.

Funny day.

Some of you may have read this on my fb page, but I'll tell it again just in case. 

We were at the zoo today, and yes, I am rather crazy as it is the middle of July and we went to the zoo that opens at 10am.  Why does it open so late in the morning?  Kids are up early, ya know.  I can only guess that the animals are up early.  Who wants to see miserable, hot animals?  I could just do that for free in my backyard.  So anyway, we were walking along the new exhibit with tigers, bears, and orangutangs and when we got to the bears, Bp said, "Look Mommy, those bears are eating those bamboo shoes."  So funny.  Refused correction!

Faithful readers...

Seems like everyone has dropped off the blogosphere these days, huh?  We're all still around, but too busy to post.  I think I've had about a millions posts go through my head, and yet they never make it on to this page.  I miss this page though, I really do.  There are so many wonderful things going on that I need to take time to write them down or else I wake up one morning and be 45 and my child will be grown and I'll never have a record of those precious moments except for in my mind.  I'm ever so grateful for blogs, and I do realize that people used to actually write in journals, and that is how they used to record things, but I'll never be one of those people.  Maybe I should try though as there is something to be said about the written word.  Seems to hold more meaning, doesn't it?  Anyway, I digress. 

So we've finally finished moving and Benjamin took the entire experience with ease.  Even Ethan did who was literally strapped in his car seat for hours on end every single day while we worked like dogs shlepping boxes from one house to the other.  What the heck do you do with kids when you live states away from family and have no childcare?  You strap them in their car seats and turn on the a/c, that's what you do.  Life does go on, and in perspective, it was only for about a week of complete madness.  People used to go on cross-country road trips that lasted two weeks with their kids strapped in car seats (actually, they probably didn't use them back then if I'm going to be accurate) and they all turned out all right.  Or I guess they all did, who knows? ha.  We've had grace in abundance with our move, and I can say that now that we're completely done with living and maintaining two houses.  That was a complete JOY, let me tell you.  Anyway, I digress, again. 

I read the previous posts, and no, we're still not anywhere closer to being potty trained.  I'm sort of done stressing about it though.  What can I do other than everything I've already done?  There are books upon books on the subject, and I've read quite a bit, and there really aren't any other methods to try than the ones we've already tried.  So... enough of that.  I suppose the kid will pee in the toilet every time when the time comes.  Or maybe not, sometimes I completely forget that he might not ever get there.  It's times like that that remind me our lives aren't normal and that's okay because that is just life. None of us are really normal anyway, we just all learn to conform.  If conformity is normal, then I suppose I'd rather my child not be normal.  Of course when it comes to personal hygiene, I think I'd rather have normalcy.  You know, just to keep my sanity.  Or maybe preserve my sanity the way in it's current state- I'm sure that I've already lost some of it as it is.  I'm sure that I'll be that crazy lady out in 111 degree heat index mulching her front yard one day because she's sick of looking at boxes.  Wait, I think I'm already there.  Alas, I digress.  AGAIN.

So on to the important bulk of this post, Benjamin.  My beloved, sweet Benjamin.  Man, is he sweet.  I wish that I could accurately portray how wonderful it is to have a 4 1/2 year old who still behaves with child-like bewilderment.  Benjamin is so advanced in so many ways, and yet behind in lots of areas- definitely textbook.  How do you test a child on creativity or their abilities to understand the world around them?  For example, I'll put a shirt on Benjamin and he will remember what he did the last time he wore that shirt (if it was a fun day, I mean he doesn't remember boring days too much), and ask me for something that he had on that day like a tiny part of a big toy or he'll look at the shirt and ask me if the baby giraffe will be at the zoo.  If I weren't with him literally all of the time, I'm sure that I'd not understand him most days.  It's just so amazing how his mind works, and I'm sure that I'll never completely understand it, and sometimes I find comfort in that.  His mind is so much more advanced than ours in so many ways, and yet we try to suppress it just for the sake of conformity.  Sometimes when he is in a situation in which he is supposed to respond and he knows, he'll get angry because he knows that he is supposed to say something in which he does not understand.  I fear that the older he gets, the lonelier he will get.  That of course makes me sad, and I try not to dwell on such sad things, but sometimes it is difficult to suppress those feelings.

Our new house has a nice garage with a room attached that is completely finished (well, it will be once we wire it to the house), and it occurred to me while I was painting his room upstairs (the lovely orange) that if we stayed in this house until he reaches adulthood, the room outside might turn into Benjamin's room.  I am forever haunted by these thoughts, and it does always make me sad, but then I look over at him in all of his 4 1/2 yearoldness and smile as he engineers something spectacular with his toys.  Who cares if he never reaches maximum intelligence according to some test?  The people who write the tests are NORMAL.  Let an autistic write a test and I assure you that we'd all fail it miserably.

The sad moments are quickly filled with precious moments when he notices flowers or a different kind of grass.  I'm elated that he finds joy in the smallest of things.  It is such a blessing, and I'm always learning from him.

weary

I am so tired of potty training.  Weary tired.  We have good weeks and then we have awful weeks.  I've been doing this for over a year.  I love that phrase, "well, you're not going to be sending your child to school in a diaper".  Well, yeah, actually, I probably will.  Oh, but except that school will be at home so at least I won't have to worry about that end of it.  So many ways ahead, and so many ways behind.  So frustrating.

sometimes seeing is believing

Benjamin is the kind of kid who is easy to love.  He smiles easily, he laughs genuinely, and will kiss you on the mouth if you let him.  It's no secret that I threw out the milestone chart years ago once it become an enemy in our house, (and interestingly, I have no idea where Ethan now lies on this chart because of it) and part of me still wonders why we go to see our regular Pediatrician for well-child visits.  They don't know my child, nor do they really care.  They get their paperwork, grab their pen, and start going down their list of things that he is or isn't doing.  Well, surprise surprise, he falls short of what a four year old is "supposed" to be doing.  We get disappointed frowns when Benjamin isn't tracing letters appropriately and looks of disgust when we talk about potty training while he's still four.  (Which btw, has been so wonderful for the past two weeks, so in your face Pediatrician!)  Yes, I really do wonder why we still go seem them... .

And then we go see the Neuro doctors and they LOVE him.  They love every part of him, they encourage every part of his development, every part of his incontinent little self.  They SEE him.  I appreciate those of you who see him for who he is, and for who he isn't.  They have perspective, they have sympathy, and best of all, they encourage me.  I'm not suggesting that you all ditch your Pediatricians and run for a Neuro doctor (they aren't all like McDreamy on tv, trust me), but what I am saying is that if you walk out of your child's appointments and consistently feel like a failure as a parent, it's time to get a new doctor.

Green..

Occasionally, I am a bit jealous of normal problems that parents have with their children.  Isn't that the silliest thing you've ever heard?  Me being jealous of a bad situation that other people are experiencing.  Such an odd thing to envy.  When I am in Mom circles, the talk will inevitably turn to something that their child is doing that is driving them up the wall, and I can't help but to sit back and listen, enraptured in their dilemma.  I usually just smile, nod, and say the polite things, but honestly, I never quite know what to say.  Part of me wants to say, "Yeah, that sucks that your two year isn't potty trained... but what if my child has no meaningful conversational skills past the age of a five year old when he's an adult.. what if my child never actually becomes a fully-functioning adult?".  These are the things that I sit and ponder when complaints arise.  Thank God for cookies because they're usually handy for stuffing in your mouth when you have nothing to say and wish to avoid awkwardness. 

It seems like my life is full of awkward moments.