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.

15 comments:

Nisa said...

I was still really angry last night. Had a hard time sleeping. I can only imagine how mad you must still be... :( It will work out though. I know it!

Nisa said...

I was still really angry last night. Had a hard time sleeping. I can only imagine how mad you must still be... :( It will work out though. I know it!

Noel said...

Thinking of you. It sounds just like our IEP experiences...they tell us what to do even though we have paperwork to say that they are wrong. The bottom line is YOU and LUKE are the one's in charge...just remember that. He is YOUR child and it is YOUR choice...not their's. They may call it a team but it is not you are the king and queen so you make the choices. DON'T LET THEM BULLY YOU>>

Katie Aldrich said...

You are fighting the good fight and we're with you in spirit. I especially empathize with the curse that is not being able to stop from crying when you feel like you're not being listened too- I HATE that I do that, and yet I can't stop it. I almost always cry when I go to the doctor. I'm so glad you have a friend who can back you up in person- what a great asset.

Alicia E said...

Mercedes, you probably don't know this, but I quietly stalk you. I read your blogs anyway. I am inspired by you. The more I read about your family, the more I am convinced that Niko was sent to YOU and Luke for a reason, that being that you will fight for him and give him every chance he can get on this earth. Sure, lots of other women would do the same (and are doing the same), but a lot of parents would not. You are the best mother this little boy and girl could have. You cry for them, but you'd also rip out throats for them. --Rachel's friend Alicia

Mercedes said...
This comment has been removed by the author.
Mercedes said...

Thank you guys so much! I told Luke today that I felt like somebody spent all day kicking me. I'm worn out. It's nice to know that you guys are on Team Niko. :)

Nisa, thank you SO much for listening to me rant. For two hours. >>

Noel, how can they even do that?! I swear, suddenly common sense and compassion takes a holiday. But you're right: they're OUR kids and we know and love them the best. Thank you for that.

Katie, you're one of the very strongest and most courageous people I know! It makes me feel better to know that you cry, too. :) Although DRAT! There goes our credibility! My strength was that I only cried twice and briefly, as opposed to the entire three hours, which is how I felt.

Alicia, I have to be honest and say that I smiled at the words "I quietly stalk you." We're both sick people. Let's be dear, dear friends!

Laura Oler said...

I'm sorry. I feel like it shouldn't be like this. You shouldn't have to keep fighting and fighting. I wish I could do something to make it better. Anyway, I do hope getting the help you deserve gets easier. We're all rooting for you guys!

Natalie and Damon said...

Hey, I talked to my student family who have a child with challenges similar to Niko's they told me that the school's have ignored them even when they expressly won't sign off on the IEP. I LOVED her suggestion. Track what they fail to provide. Then you turn around and use that as leverage to get what you really want. i will be there with you all the way, and am looking into learning the advocacy ropes so I can do it for other families. You were way stronger, and better than you felt, and I was happy to help in any way I can. Niko will get all the help he need, especially with you as his Mom. No, we did not sign off on anything autism classroom related. IF they try to shift him, I'll help you fight.

Phil and Kelly said...

Phil and I will be thinking of you guys and praying for you. I'm sorry there isn't more we can do. Keep it up you are so strong and an inspiration to all of us.

Kevin and Lynne Smith said...

You know it really is very sad that their measures of success are so far different from yours, the parents. I have a delayed granddaughter. My daughter-in-law came home from school similarly dejected saying that Miss Emily hadn't reached her goals. I said then change the goals. Because we now can understand her, she makes complete sentences now. She can follow instruction.......SO CHANGE THE @##% GOALS. Success, no matter how small is success. These special children's successes are measured in millimeters not miles.

camille said...

Mercedes,
I haven't commented in awhile, but my son Connor (4.5 WS) was also suggested to be in an autistic classroom. Something about this just didn't feel right to me and my husband. As one friend said, the supports offered in that program would be good but the environment itself would not be good for him. He has natural strengths in socializing and we want that reinforced with typical children...anyway, we had a really bad experience his first year of preschool, which was in a devp delayed classroom...so this year we put him in a Christian preschool in a typical setting that does not discriminate against kids with disabilities. OH MY WORD. Talk about a night and day experience. The people who work with him are SO kind and just love him. We can't get over the difference between this year and last year. It's amazing. I know this isn't the right option for everyone, but something we realized about Connor's education is that for our family, it is more important WHO the people are that working with him than what credentials they have. I'm not saying I want uneducated people working with him, I'm just saying to me it's more important that they are kind, trustworthy, loving people who see his strengths first. Because of this experience this year, we are now reconsidering his entire education plan - we had assumed he'd be in a public school setting but after seeing him halfway through a year at a private school, we are now thinking of putting him in a small special ed program in a Christian school, where he'd have a much smaller teacher-student ratio and would probably have the same teacher for K-8th grade - now that's consistency (as long as that relationship works!). Nothing is set in stone yet, but we're leaning that direction right now.
Also, since he also does respond well to ABA, he is receiving a home ABA program 15 hours a week. We had to hire a lawyer to make this happen, but it happened. I know it's so hard when you are put in a position where you really don't know what to do and what the next right move is with his education. I totally get that. I would definitely say to go with your gut. If that program and new school they are recommending feels wrong to you, don't do it! If you want to talk further, feel free to email me at cjlakjer@yahoo.com

Amy said...

I felt the same way at Avery's last IEP, and the concerns were not as serious as yours. I feel helpless to her her because they made their decisions and wouldn't budge. In regards to ABA, could Niko get an aide that would be by Niko's side and able to reinforce the ABA rather than rely on the teacher? Perhaps this could be your response to them? Avery has an aide, she is great and she does more than the therapist ever could. Sorry for your miserable experience.

Mercedes said...

Thank you, my friends. Camille, I'll be emailing you. Amy, that was something that Natalie asked them. The teacher said that there is a classroom aid who spends most of her time with Niko while the teacher takes care of the rest of the kids. This isn't fair to the other kids, and the teacher feels spread to thin. Natalie asked about getting Niko his own aid, and the District representative said that they had floater aids if somebody needs them, but that they assessed the situation and the classroom doesn't need another aid at this time. So the teacher is stretched thin and that's a reason why they want to move him, but they are absolutely correctly staffed and don't need any other help. This was one of the many inconsistent arguments that they presented.

Nishant said...

I can only imagine how mad you must still be...

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