Saturday, May 11, 2013

Me, Myself and IEP's...

~"You better stop 

Look around 
Here it comes, here it comes, here it comes, here it comes 
Here comes your nine-teenth nervous breakdown. ~" Jagger/Richards




   
I really don't like being called an advocate. I think that regardless of who or how my kids are, I would do my best to get them whatever it was that they needed. Sure, having a bunch of kids on the spectrum has caused me to have to be more of a presence in their lives out of the house.  But regardless of diagnosis-I'm a mother-that's what I'm supposed to do. It's one of those unwritten rules that comes with the handbook-that I think every child should be born holding. Oh, if only each child arrived with a user guide-imagine how things could be.  "Honey?  Why won't our son sleep?"  "I don't know..check the book-look in the trouble shooting guide, I think it is on page twelve.." "It says here that he needs a weighted blanket." "I'll go get one now."  "Great!"   Or better yet-think of IEP meetings! "The team thinks that these services are no longer necessary for your son/daughter." Instead of getting angry, or spending lots of time and sometimes money hiring attorneys or advocates, you could simply say.."I'm sorry, but page 67 of his/her user manual states "All services are necessary and shall not be removed under penalty of law except by the consumer ."  It would be heaven.

  I hate IEP meetings. Sitting in a small room thick with the anxiety and sweat of all the IEP meetings that preceded yours.. listening to a slew of information you mostly already know..only in greater detail. Told to you by a bunch of people who have been stuck in that tiny room all day-and who probably want to get this over with more than you do. First, you hear all the pleasant adjectives describing your child.."He is, nice, friendly,wonderful,charming,funny...etc(I have had so many IEP's over the years that I think that Sam has gone through the adjective list at least twice-and Oscar isn't far behind)  Just once I would love to hear "He is a kick ass kid!" or "He freaking rocks!"....anything to just shake it up a bit. After the adjectives comes the list of deficits-kind of like Festivus for the educational set. Although this year-I was pleasantly surprised as they listed their accomplishments instead. After that you get to hear what they think should be done, how they are going to do it and in what amount of time it will be done in.That's when the real party really gets started. This is where you get to say what you think..and sometimes it works out..sadly, lots of the time you have to...exchange strong words..sometimes loudly...If you've done it-you know the drill. For any of you about to go through one-I wish you the all the best.  We were lucky (so far) this year,  Both of my boys meetings went well.  We'll see in the coming year how closely their plans will be followed-but THAT is a whole other story.

  So, I have two meetings down and one to go. Unfortunately, the one that is left, is the one I have dreaded the most.  This year (as is done every three years here) Zoe is being re-evaluated.  Fine-if that is what they have to do-so be it. The thing of it is-my little girl always seems to have to prove that she has issues. From her very first IEP meeting on. Her autism is not obvious.Social situations confound her at times.  She is very quiet(at school)-she hates drawing attention to herself. In fact, she will do OR SAY anything that she can to take attention off of her. Even if it means she has to lie or fake it in order to do so. For instance, if she tells me she is having an issue (and it takes a lot for her to vocalize this) I will do what any parent would-I'll call the school and let them know. We praise her for telling us  and promise that we will fix it. Only to be told(by the person we spoke to) later "No she really doesn't have an issue with that-I spoke to her and told her that it was probably really just this and she agreed with me. So we aren't going to change anything..because I was the same way as a child and it worked out for me. She's just going through what's "normal" for a girl her age."  What they don't seem to get is what this does to her-how she internalizes this.  Instead of just accepting what she tried to say-they put their own reasoning in- which pressures her (who is so very unsure of herself) into agreeing with them. Something also tells me that when they were a child dealing with their issues-their "normal" didn't encompass hours long screaming/crying jags, and hitting themselves, banging their heads on the wall..or curling up in a ball and sleeping for fifteen hours straight. But, they don't see that part-so therefore it doesn't exist. 

 We had another school issue last week. We tried diligently to figure out just why she was doing what she was doing.. I said-"How can we help you if you don't let us know what is going on?" When she finally did tell us, she begged us not to try and fix it "No! you always make it worse."  ..*sigh* so much for advocacy or parenting..I feel as though I failed my girl this year.  

  So, her IEP is next Friday-and I don't believe that I will be able to relax until it is over. I do have to say-that she has had some wonderful people around her this year as well. People who have really tried to make things as easy as possible for her. My biggest fear is that there will be an attempt to take away this support. All because she seems "so normal." Who knows-maybe I will be delightfully surprised.  Either way-I refuse to fail her this time.  Oh, if only I had a damn owners manual...

7 comments:

K Wombles said...

Hugs. I hope that they surprise you and that the supports remain the same.

Plus, I can't help but feel that this behavior, once the teacher knows the kid is going to agree just to get out of the discussion, amounts to bullying. You know?

kathleen said...

Thanks. No, I believe that they really believe that they are right. It is the oddest thing..my daughter has a real diagnosis-yet, because of the way she presents herself-people do not believe it. "She is a normal child" (which of course she is-but she handles things differently)..and my favorite "I did the same thing as a kid"..well, maybe they did-BUT I don't think that they internalized it the same way...

Looking for Blue Sky said...

Very hard for you if you've promised to fix your daughter's problem and then find you can't because no-one will listen and then it may be harder for her to trust perhaps? Oh I really hope the IEP is everything you hope for and more.

And I wish my children came with handbooks too xx

kathleen said...

@bluesky-Yes!That is absolutely what I am worried about..and a manual would be so wonderful.

Stephanie Allen Crist said...

I think I'd prefer the user-manual to uploadable. Delivering a book sounds even more unpleasant than delivering a baby. Besides, I'd suspect it would be of considerable size.

kathleen said...

Ha! Stephanie-you make a great point! I can just imagine the many volumes that the guide would have. Perhaps the stork could deliver them?

Stephanie Allen Crist said...

A stork would work for me. ;)