Friday, April 29, 2016

In search of a square hole...

When you spend a lifetime hearing how your son isn't smart enough, healthy enough, tall enough, heavy enough, good enough; for basically any program or class or environment you come into contact with; you really do just become numb to the entire process.  It's not something you allow yourself to be hurt by anymore.  Because the situation is basically static.  Even though young brains are 'plastic', they like to say, there are some things that are just not going to be fixed.  Enlarged ventricles, for example.  Microcephaly.  Polymicrogyria.  Thinning of the corpus callosum.  Those things are fantastic malformations.  Permanent.  There to stay.  Lots has to go wrong for those things to occur.  Generally speaking, even a hard core alcoholic or drug addict can avoid having a kid whose brain contorts like that.  But somehow, we managed.  Due to him not being diagnosed yet, we don't know why.  But someday, we will.  Most of his docs still feel it's genetic.  So they feel answers will be forthcoming as science catches up.  (Oh, to not be a trailblazer.). I've spent hours staring at images of his brain.  Marveling at the multitude of mistakes that were made during development.  Wondering how I could not have known all that was going wrong inside of me at that moment.  I've read tons of journal articles about each specific problem...(while stopping every fourth word to look up the words I don't know the meaning of) and have read enough to know that there's not going to be a major scientific breakthrough that's going to 'fix' our son.  This, right now, is how he's going to be.  Of course, I'll always believe we are all able to learn.  Every single one of us.  And I will never give up on him.  As long as I am breathing.  So I will try to teach him and help him and further his abilities until I am boxed.  But all the while with the knowledge of those scans and those particular items of brain damage dancing in my own head.

But when you hear he's not enough for a program specializing in people with disabilities, that is a tough one to chew on.  I've felt like our family has been bouncing around like a ball in a pinball
machine for years, trying to find a place to rest.  And I thought we had found it.  All we've heard about since we've moved here is This One Place.  This One Place where he can go for a summer program.  Where he can go once he ages out of school for a day activity program.  So it's been The Place in our minds this whole time.  Which is our fault.  We knew better than to rely on anything where he is concerned.  We put all of our eggs in one basket.  An epic error.

We went for a tour.  Nothing extraordinary.  They went to observe him at his school.  Then, the call.  'We have some concerns.'  'He does some spitting-I know he doesn't spit at people, but still, he spits a little.'  'We could try him in the summer program but we aren't sure it would work.'  'We aren't like the school-we don't have to take everyone.'  'We would have to split the program in two now because the place we were going to hold the summer program has carpet.  And we can't have him on carpet.'  'We would have to have him in the other building where there's no carpet.'  Each comment was like taking a bullet.

"But you're our place!"  I wanted to scream...."You're our bedrock for his future!"  "You don't understand!"  "You have shiny brochures!"  "You specialize in people with disabilities!"  "He has those!"  "He should qualify for this!"

But, I didn't say much of anything.  Because, when you're dying inside, the words don't flow much.  So now, he doesn't even fit in WITH HIS OWN KIND.  Which puts us into yet another category.  Which is ???  I don't even know?

So, a flurry of emails and phone calls later....a couple of hours of sobbing....a couple more hours of wondering whether a move to Canada was in order....ended in a night spent feeling numb.  Where do you go, when the place you're supposed to fit in; the place that's supposed to accept you, says you're not going to fit?  Where....where do you go?

Do you know why you read about parents of disabled kids doing horrible things to themselves and their children?  Because of things like this.  The government doesn't care about them.  Society shuns
them.  Friends are lost very early in the game.  Families rarely help, if at all.  (Except in our case-his grandma is his Godsend.). Programs that are supposed to help end up discriminating against them.  People end up feeling very, incredibly, terribly, alone.  Alone, with a child who is now going to be living at home forever.  Or, for your and their forever.  However long that is going to be.  Dreams died a long time ago.  Hopes were squashed in the first few visits to the geneticist or developmental pediatrician.  Your sense of humor develops into a very bizarre and twisted form of entertainment.  (Because, you laugh or you perish.  Simple as that.). The next time you read one of those stories, before you judge, stop and think a moment...what did this family have to go through, that led up to this horrendous decision?

A night of fitful sleep rose to a morning of sun-filled clarity.  Mason deserves to feel welcomed.  He is more than his behaviors.  He is a person.  We will not send him somewhere where they are waiting for him to fail...where everyday might be the day that we get the call that tomorrow is the day he can't come anymore.  We've worked too damn hard to get him to this point.  Given up too much.  Likewise, we cannot be held responsible for his behaviors.  I cannot be called daily and told how he misbehaved that day.  Because I'M AWARE.  I LIVE IT.  If I could fix him, I would.  (By the way, interesting side note....those parents that say, "I would never change my disabled child; I love them exactly the way they are...."  Those people?  Liars.  They are lying.  Because....if they could make it so their child wouldn't suffer anymore, they damn well better change it. When you hear people saying that, they're speaking on behalf of themselves, not their children.  If I could make Mas able to speak so he could tell us when he has a raging double ear infection, I would.  I could make his bowels work so he wouldn't have painful constipation, I would.  Just FYI.).

As it turns out, That Place doesn't deserve to have him.  We should be choosing or not choosing places....not the other way around.  And the cost to go there?  For what they're charging, the decision should be ours, not theirs.
As I put his coat and backpack on this morning, I told him, he was too good for 'that place,' and we would find him something better.  Then I kissed him on the cheek.  He ignored that and started to stim with his backpack strap.  That's the gig.  But I know.  I know that I will get him where he belongs, even if that place is just our house.  Because I have a square hole drill bit, and I'm not afraid to use it.

I found a quote this morning that fits the situation perfectly:  "Why are you trying so hard to fit in when you were born to stand out?"-Ian Wallace