Saturday, June 2, 2012

Some things just don't turn out as you expect.

I took a personal day today.  It's a rarity for me, the personal day.  I only take off for professional development and when I'm near death.  Like I said earlier this week, I hate writing sub plans. But today I had a meeting at my son's school to discuss his future.

My oldest son is ten.  He'll be eleven actually, at the end of this month.  And he has autism.

When I told my students yesterday that I had to be out today, because I was going to a meeting about my son and his autism and how it is affecting his education- they asked me- What is autism?  And you'd think I'd be able to explain it, but I can't.  It's still a mystery even to me.  I don't know how to explain to them that he can talk- but yet he doesn't communicate.  I don't know how to explain to them that I have no idea what his favorite color might be, if he has an opinion on the weather, or at any given moment during a spectacular meltdown what on earth is bothering him.  He can be sitting right next to me, yet he might as well be on the other side of the world.

I can remember the day it pretty much dawned on me that he was not just "developmentally delayed".  It was late, and my father-in-law had called to express concern over my son, and as his dying wish he wanted me to have him evaluated.  I went into his room, and looked at him curled up in bed fast asleep, looking like an angel.  I stared at him thinking about what this would mean for him as he got older.  I thought about all of the mother fantasies I had been having about him playing sports, and bringing home friends, and growing up and playing drums and dating girls and getting married and everything one could do in a lifetime.  And whether it is correct or incorrect, having him diagnosed with autism, and not a mild case of it either, sucked all of those dreams out of me in one breath.  It was almost as if he had died.  And it's been about eight years now, and none of those previous dreams have been replaced.  We go day to day, trying to get through the present- and I don't think much about the future, because based on the current skill set- he's going to be an adult, living with me for the rest of his life.

Next week he'll "graduate" from Elementary school, and was meant to go on to middle school. But that's what the meeting was about.  Whether or not he should go to public middle school.

I've been very torn over this.  As a public educator myself, I've fought to keep my son in the program.  I've tried to believe that they could make a difference for him.  But every year it seems that a new aggravation develops.  I endured two years of him having a teacher who felt the best way to teach him math was on a calculator, and so he never learned one to one number correspondence.  I've dealt with him moving to three different schools in three years because they keep transferring his new teacher from building to building to building.  I've put up with constant questioning and meddling into his health from being sent home because his nose was stuffy, to regular notes speculating on his teeth even though I just had him at the dentist, to comments about "his medication isn't working" which prompts us to go to the doctor who changes the medication and then the new medication has zero effect at all and we end up dealing with a young boy going psychotic for three weeks and beating himself with his own fists until he is a walking bruise.

So when I hear from my ex-husband that they are talking about having him hospitalized or institutionalized- and they don't even call to talk to me about it, I guess I sort of decided to hell with public education.  And maybe that is an extreme reaction, maybe I'm not being fair.  But I don't know anymore.  I'm not giving away my son to an institution, I'm not sending him away to a hospital, and I'm not going to be forced into a conversation about such topics when it is not an option, period.

That leaves us with private day treatment programs.  And therefore today at the meeting I guess I was not the most pleasant of people.  I suppose I was rude at least twice.  I think I frightened one of the men.  I think I offended my son's teacher.  But I feel like I fought for my son, I'm hoping I've decided what will be best for him.  So I guess I have to not care about the rest of it.

I checked on him again tonight after he fell asleep.  He looks so much different than he did eight years ago.  He is almost as tall as I am.  He is as strong as the Incredible Hulk. He's got that ridiculous peach fuzz mustache boys get.  I still don't know his favorite color.  Maybe he doesn't need one.  I don't know his opinion on the weather, but I know he loves strong winds, and rain storms, because he laughs and makes his happy squeal and runs out onto the porch whenever we have either.  I don't know why he sometimes  melts down.  And maybe he doesn't either, but I'm hopeful that this new day program that specializes in autism is going to help us both crack the code.  If he can understand and express himself, certainly that should help.  One thing is still the same though- he looks like an angel when he's sleeping.

2 comments:

  1. Be proud that you fought for your son....I can only hope that Dan and you are on the same page..just to make it a little easier. Know that you and your kids are in my thoughts
    -Jen

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    Replies
    1. Thanks. And we are, so no worries there.

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