Wednesday, December 30, 2009

Terribly Lucky

I wrote a little Williams Syndrome post over at my writing blog.  Quite honestly?  I was touched that so many people were so kind and supportive about the post.  Sometimes I feel like we are so incredibly isolated, but that isn't the case.  How terribly lucky we are.

You can read my thoughts HERE.

Thursday, December 17, 2009

You Betrayed Us.

A lot to report.  Niko lost his first tooth. He looks at me with love and kisses me constantly.  Niko handed Nina her milk, and I said, "What a nice big brother!" Nina said, "Thank you, Big Brother," and I nearly cried, it was so sweet. I entered a blog contest and won three pounds of chocolate!  You can read my entry in the comment section here.

Today was Niko's IEP. It was, without a doubt, one of the worst experiences that I have undergone.  And you know what?  There are a lot of rotten experiences!  The question was whether or not Niko would do well in an autism class, mostly because he responds well to ABA reinforcement.  It's difficult for his wonderful teacher to use it as much as she'd like because she has other students in the class to worry about. So is this something we should do?

Originally I said that maybe it's something we should try. But I met with the geneticist again, brought it up, and both she and the other doctor said no.  Although he has autistic behaviors, he isn't autistic. He'd miss out on the social and verbal stimulation that he needed. He'd pick up on negative behaviors. Autism classrooms are often used for a catch-all, etc etc.  I wrote the school and said that I'd rather not put him in the classroom.  I got a note home saying that we'd discuss placement at today's IEP.

I brought my friend Natalie, who studies this sort of thing at school and can keep a clearer head than I can. And it's a good thing, too, because during the grueling THREE HOUR IEP (holding Nina on my lap) Natalie came in really handy.  This wasn't an IEP, it was a war. They had made up their minds that Niko should be in an autistic classroom, and after some intense questioning by Natalie (while I'm reeling with my hands up in self defense) we find out that the school doesn't even HAVE an autistic classroom.  They were planning to ship him to another school, and never even mentioned the fact! Less than an hour earlier I had them write in his IEP that one of the challenges we faced was that Niko was shipped from school to school.  This is a boy that needs consistency. Nobody sees his progress because he isn't in one place long enough for them to get a picture of how far he's come.  Sure, he's a challenge.  I'm his mother; I know.  But he has come so far!  He isn't biting anymore.  His tantrums are less often and less severe.  He's following directions.  He's minding more. But they can't see this, can they?

I cried twice.  They weren't trying to convince me, they said, but I told them that is certainly how it felt.  "You're being pushy. I feel like you're pushing me," I said.  "You really are," Natalie informed them.  Seriously, worth her weight in gold, that one.  There was a point where they weren't even talking to me anymore. I had faded away. I think Natalie even made one of his IEP goals. 

It felt ugly to me. I felt ambushed and betrayed. I thought it would be difficult, which was why I brought Natalie, but I had no idea that my opinion would mean nothing.  They said these were just recommendations, but it was clear that I would be negligent if I didn't follow the recommendations.  Luke says that it's pretty clear to him: the geneticist, who knows more about Williams Syndrome than anybody else that we have ever met, said that she's against the idea.  That should be enough. The fact that I said no and cited this as a reason should also be enough, but it wasn't. My opinion was completely brushed off.  I couldn't believe it.

Of course Luke and I are going to discuss it, but I'm pretty sure we've already come to the decision. Although I think a few people in there, like his teacher, are genuinely thinking about Niko, I think others are more concerned about being right, or getting the challenging boy out of the way. I'm not only angry (okay, enraged) but I'm hurt.  I feel betrayed.  These are people who are supposed to look out for my son, but instead they're shoving him aside. Who has his best interest at heart?  I do. He is my child. I make the decisions for him, not them. They presented me with an illogical, contradictory argument that raised red flags. I also feel that they should have been upfront about switching schools, especially since it is such a concern for us. Seeing as Niko has been physically hurt by a teacher before, naturally we're gun-shy about sending him somewhere new, where they have to get to know him again.  And again.  And again and again. 

Somebody told me today to listen to my heart. My heart says it's tired of fighting and hurting.  And yet I realize that it will be like this for the rest of our lives. My job is simply to be up to the challenge. Can I do that? Surely.