Saturday, August 9, 2008

Random thoughts

It's been an eventful couple of weeks. Between Jaymes' rapidly deterioration and our mounting financial issues, I've been kind of crazy. Then add in the big fight Jason and I had today over the horse, and it's just that much worse. Basically, he told me Buddy has to go. We're killing ourselves trying to keep up the massive, costly feeding program he needs to get back to a healthy weight. We're doing it, and he's never been without, but it's not easy. Then, when I posted around trying to set up a new home for Buddy, Jason told me to take it down, that he couldn't do that to me and Jaymes. Conflicting, much?

I guess what we decided is that until we find out whether Jason got the job he applied for last week, we'll keep on doing as we have been. If he gets the job, he'll be making like $25K a year. Twice what he makes now. We'll be able to feed Bud's without starving ourselves. If not.. Well, I don't want to think about it.

In other news, Buddy gave us a colic scare today. He was down in the pasture when we were leaving to go to Target, and I decided to go mess with him, because lying down horses are so cuttteeee. On a normal day, he'd have jumped up the minute I came near him. This time, he stayed down, head resting on the grass and moaning. He stayed down for about 30 mins, alternating between lying upright with his head up, and being flat out on his side, and rolling. Got him up and walked him a bit, and spent the rest of the night doing the colic thing. I checked him about an hour ago, and he is wandering the pasture, grazing. No more lying down, no moaning, no sweating. I'm hoping I won't find a dead horse in the morning, and that he's recovered.

I've been thinking a lot... I read all these stories about parents of Autistic kids, who go into IEP meetings and demand things- be those things communicative devices, classroom aides, more therapy time per week- and GET THEM. How they go in there and argue it until the school people can't say no.

What I want to know is this... HOW?! Everytime I so much as mention anything i'd like to see done for Jaymes, they stare at me like I've suggested that I'd like to get intimate with the teachers pet armadillo. I'm dreading the next IEP, because I want a classroom aide for Jaymes. He needs someone to be one on one with him, keep him on task and actually working. I'm sick of coming to the classroom to see him playing all alone in a corner, while the other kids play and learn together.

I called last week and asked whether he had an IEP prior to school starting. They said no, and they couldn't even schedule one until after school had started. Ok, then. I explained that I wanted to try and get Jaymes set up with an aide, and immediately you could tell the alarm bells went off. "oh, well we can't do that. That might be at the school principal's discretion. We would have to have him evaluated in the classroom by our behavioral team. We need to test him some more." On and on with excuses.

It's not FAIR or right to test Jaymes like that and think that the 30 mins they watch him in a classroom define him. Of COURSE he won't be difficult/violent/screaming/self injurious when they test him. He'll be in a brand new classroom, being allowed to do whatever the heck he wants to do. There are too many kids for anyone to do one on one time with him for more than a few minutes a day- if that. They'll watch him do his own thing, or follow the other kids for the potty time trip, and say he's fine and does not need anything. How do I even argue with it? What can I say to get the point across? Why do I need to feel guilty, like I'm being unreasonable for asking for the bare minimum to help my child get an education. Why is the school district so much more concerned with giving as little as possible, rather than doing right by these kids?

I'm trying to find an advocate to come to his IEP with me. I cannot advocate for jaymes adequately, I admit that. I need someone to push, to get Jaymes what he needs, who won't take any crap, and who won't be intimidated.

I hope that I can find an advocate. I hope that they too will not laugh at me and say I'm being unrealistic.


Anonymous said...

Take a video of the bad times with Jaymes. Show it to the school people, and then ask them if he doesn't need an aide.

Jen said...

It sounds like the school is jerking you around. Your child has a legal right to a free public education that meets their special needs. Are you a member of You would find a lot of great help there. Here is a basic information sheet of IEP information. It might be a good starting point.
Don't give up! (I know you won't!) Getting services isn't always easy but it's so worth it. Do you have a doctor or therapist that could write to the school on your behalf just to get the school's evaluation process started? That might be a good starting point. Good luck!

Tara Nicole said...

My Amberkins...the only logical thought I can come up with this late...and yes thats sad (only one) lmfao! Is to have all these freakin' docs/therapist/whatever to write/call/contact Jayme's school...don't know if that will help but then the school will NOT have any wriggle room with the BS because he's been eval'd by professionals....just a thought....hope it helps punkin' *wink* hang in there kido' you got brass balls in those panties....somewhere, I KNOW it! LOL!

BCC said...

Start here:

"The Complete IEP Guide: How to Advocate for Your Special Ed Child" by Lawrence M. Siegal

Yes, you do need some help. More importantly, you need to know the law. The more obvious it is to the school that you know the law, the more responsive they will be to your concerns and demands.

Right now they believe they have you over a barrel and you don't know what you're doing. They need to be made to understand that providing for your child isn't a matter of doing you a favor for which you should be grateful. This is called following the law and they need to get on board before you educate yourself right into threatening them. They have an obligation and it is time to start meeting it.

The more educated you are on this process the better, and this book is a good place to start.

Good luck.

Amber DBTD said...

I know, I need to learn more so I'm not entirely ignorant.. I just have not had the energy lately for much.