Thursday March 1, 2007
I have my nose buried in books about IEPs. This is not something I want to learn. I don’t wanna, I don’t wanna, I don’t wanna! I am trying to change my attitude about this because Zane needs me to know this backwards and forwards. A part of me is resentful that I (or anybody) *has* to do this. Why do there have to be laws that tell people they must treat people with respect and honor their learning styles. Why can’t people just be decent human beings without it being legislated. Of course, people aren’t like that, and I am grateful that somebody has gone before me to fight for the laws and that there is something in place to force people to be decent. I just think it is sad that it has to be there.
I also think it is one of the hidden stresses of having a SN child. The mountain of paperwork you have to fill out at every juncture. I can’t just call up a teen and see if they can come over for a few hours. I have to call to get respite care, fill out tons of paperwork, be put on a waiting list, and then *maybe* I can get a few hours here and there. I can’t just send my child to school with a backpack of new school supplies. I have tons and tons of paperwork, and will need to force an IEP meeting, and will have to hire people to go with us to the meeting because the school district is notoriously bad unless you know how to navigate it. It is possible there will be a lawyer involved at some point, depending on how it goes. Most people do not have ‘legal representation’ on their school supply checklist.
Ah well, I just need to get through these books and I will be much more prepared. At this point, it is intimidating, but as I sift through it I will learn and it will be just fine.
In child cuteness news:
Zora is solidly in the ‘dismantling phase’. She takes books off of bookshelves, pans out of drawers, and empties anything she can get her hands on. She is also trying to stand on the coffee table and I saw her trying to get up onto the chair today too. The chair is about as tall as her shoulders/chin if that gives you a concept of how cute it was to watch her attempt to climb it.
Zane did something today we have worked on since the first therapy session, and almost every session since and almost every day at home. He picked up a pencil correctly to write with it. Very cool. He didn’t repeat the grasp, but it did happen once, so it is bound to happen again. So proud of him. He is working so hard.
He is also starting to employ delay tactics for going to sleep. First he started doing the classic ‘drink’, but we started asking him right before we went to bed, so we know he isn’t actually thirsty, so it wasn’t successful. Now he asks me to come and pray with him. He already prayed with daddy after bedtime stories, so he knows that isn’t going to fly, but he knows I am not going to deny him prayers. lol. Smart kid. I do try and make it short though, although tonight the “God Bless….” went on to include the therapists and several names that I assume are teachers at his preschool. Very endearing.
He then did a Zane version of ’scared of the dark’ (wanted light on and cried when we closed the door). I gave him this temporary light. I guess we need to get a ‘normal’ light because this one kept turning off just as he was drifting off and he would get scared until he was able to get it back on again.
I just wanted to give you some virtual support. I only have a partial view of what it must be like to raise a SN child–my brother has cystic fibrosis, and all through school it was a physical and learning challenge for him, and my parents got a crash course in advocating for their child at every turn.
So far, (knock wood) I have not had to travel the path you travel with either of my girls. But I know that at any time something could change, and I give you a lot of credit for the open sharing you do, and for the wonderful attitude you present here in your blog. You are an inspiration.
Ugh, tell me about it. And the worst of it is, a parent has to fight tooth and nail to get what their child is legally entitled to. They make you be the loudest squeaky wheel you can be. Meeker parents, and thus their kids, fall by the wayside. Only the bitchy and persistant have a shot at getting what their child needs. It wears you down. I wasn’t up for the fight and it’s a good chunk of the reason we’re homeschooling. Good for you for doing your homework! So many parents don’t.
And you have to be on your toes everyday. Your child doesn’t just come home with a cute project they did, some library books, and a worksheet or two. You have the behavior reports, the problems, the issues, the discovery that they are trying to weasel out of the IEP if you turn your attention for a millisecond, the day to day reminders that your child is different, your child doesn’t fit in, your child makes so much more work for THEM. **sigh** Sorry to be a downer but that’s how it felt for me.
That’s good news about the pencil grasp. D struggles with that.
We put a dimmer switch on the lamp in Boo’s room so she can keep it on but it’s turned way down. We used to turn it off after she fell asleep but she’d wake up in the middle of the night all upset so we keep it on for now.
I had a night light until I was 12 years old. Of course, I also had older brothers who liked to tell me scary stories.
I wish I had some words of wisdom of encouragement re: IEPs, but all I can think of is a *nightmare* IEP story from back when I worked with adolescents with mental health issues. Also, I love Zora’s onesie.
There has been some *great* info on IEPs on the hyperlexia list I’m on recently. I have been skimming it because I don’t need it (homeschooling is the I-est of any IEP :-)) but you might find it helpful. It’s a great group.
http://health.groups.yahoo.com/group/H_P_N/