Sunday, November 22, 2015

Where To Begin?

As most of you know, my middle son, Charles, has Down syndrome and my husband and I have fought to keep him at his home high school.

To say that this week has been a battle, would be an understatement.  

I know when I am defeated.

I am trying not to look at it so much as a defeat for me (it's not about me, anyway.) as a setback for Charles and the inclusion movement; but a temporary setback only, not permanent one.

Here is a short summary of what's been happening:

Charles started the school year as a full time student at his home high school; something that we had been working toward his entire school career.  

To back up a little; my husband and I know that the best placement for any kid is among their peers.  The term peers means different things to different people, though.  To us, it means the kids he has grown up, who are in our neighborhood, that also go to his home school.  To many school officials, though, (and honestly, quite a few parents) his peers are the kids with disabilities that go to the "program" at another school, twenty minutes (on a good day) from our house.

To me, sending a kid to a school not of their choosing, away from their friends, feels like a punishment.  THEY assure me that it isn't.  THEY say it's in his best interest.  So, last year, as a compromise, we sent Charles to THAT school for half the day and his home school for half.  It seemed to work out pretty well, but there were problems with it, as well.  The midday commute was a pain for him.  It made me worry, too.  My vulnerable kid (as strong as he is) commuting each day in the back seat of a cab with no security cameras, with god knows what kind of driver.  

There was also the feeling of not really belonging in either place. 

It wasn't good, but it was okay.  We knew it was temporary; that this year, we would get full inclusion at our home school and that would be the end of that, la di da, happily ever after, amen.

No.  That isn't how it happened.

I'm not exactly sure when things started going South.  It could have been the first day of school, for all I know.  Asking Charles how his day went always resulted in the same answer:  "Great!", with no details.

I asked within the first few weeks of school that we have a meeting to discuss how things were going, to nip any potential problems in the bud and build on what was working.

I didn't get that meeting until November 2nd, two and a half months after school started.  By then, I had received many, frantic calls from various teachers, school deans and other assorted school officials.

He was decorating the toilet with toilet paper.  
He was falling down (on purpose) in the crowded hallway.
He was cursing at teachers.
He was not cooperating.
He was talking about feeling stupid.
He started talking about killing himself...the day that happened, Danny and I both left work to pick him up.

He was feeling overwhelmed.  It was obvious.  It was heartbreaking.

We had a meeting.  We came up with a plan.  We felt GOOD about it.  It was going to work!

It didn't.

It really didn't.

I've described Charles as a silent film actor trying to convey his feelings and I think it's an apt description.  He cannot always tell us in words how he feels; though he HAS the words, he often doesn't get them out fast enough for the listener or in a form that the listener can understand. 

So, he punches and chases kids.  Translation:  You are cool!  Be my friend!
He tries to kiss girls in the hallway.  Translation:  I really want a girlfriend!
He falls down.  Translation:  See me!  
His words get misconstrued or misunderstood. 

He gets frustrated.
He feels like a failure.
He feels very different...and he HATES IT.

His feelings are the same as anyone else's and he understands so much more than most people give him credit for.  
His comprehension of feelings is deeper and more mature than many, if not most, adults I know.

And it breaks my heart again, because HE GETS IT.  He GETS that he is not fitting in and he doesn't know how to.

So, he falls down some more.  He acts out SOME MORE.  He get's in more and more trouble.

He turns over his desk.
He clears out a classroom.
He gets suspended.

He isn't going back to his home school this school year.

and I am sad.

I've been trying to put it into perspective.

I told Danny that I am sure that when the schools in the south were desegregating, they didn't send the class clowns in, first.

They sent the most studious, the most serious ones.  The one's that would not flinch when people spit on them or called them names or knocked their books to the floor.

They did not send in kids who would decorate the toilets with toilet paper.

I get this.

Whether it is right or wrong then OR now is beside the point.

I get that there are rules that need to be followed by everyone.  

I wish that things would have turned out differently.

We will be back.  We will try again.  We will get to the front of the bus; but someone else will have to lead us.  For now.

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