New School

Tristan started at his new school last week. His school is absolutely wonderful. The teachers seem to genuinely care and seemed eager to understand Tristan's particular special needs.

I was worried I'd have to prepare for a battle, guns ablazin', ready to fight to get him what he needs. To my shock (and pleasure) none of that will be necessary (yet.)

Today, Tristan came screaming to me about this terrible insect on the fence. He described it as "yellow, with fang-things like this," (he put his fingers in front of his mouth like a tarantula,) "and it's like a bee, but no wings!" I ran over, thinking it must be a really big termite or something. He'd found a cicada shell. I pulled it off the fence and showed him how it was hollow inside; no bug! He was amazed and didn't seem to understand where the inside had gone. It's just so funny to me because I grew up with cicadas and never really considered it before. This is all so new to him that it's almost like I'm seeing it for the first time, too.

On Halloween day, we spent most of the day working in the yard. Tristan grabbed the broom and sat in the middle of a leaf pile. I asked him what he was doing and he explained that he was in a boat, paddling down the water. Sometimes his imagination just cracks me up. He spent the next half hour "paddling" frantically. He even got his little sister into the "boat" along with him. They ended up playing really nicely together in our front yard for most of the day.

I can't wait to see what little things he'll discover each day.

School System Fail and the Scary Voodoo Doctor

Overall, I really do think Tristan is doing better. His behavior is still swinging from one extreme to the other, but he's calm and stable more often than he has been in a long time.

If he doesn't take his medication right on time, we're in for a bad time. He gets really revved up right before medication time and I've given him the medication up to half an hour early just to keep things calm.

Our insurance company's patient advocate called a few days ago and I complained to her about the school system. Tristan has a letter on file explaining what needs to be done should he have a meltdown and remove his clothing. He has had tactile hallucinations involving seeing bugs crawling over his body and removes his clothing when that happens. Anyhoo, the patient advocate told me that he should NOT have a letter, he should have a 504 and services should be provided because of his illness.

Honestly, I've been fighting with the school system for a while. They insist that his mental illness does not affect him in school. That's obviously not the case if he's removing his clothing in a classroom setting. I'm so tired of fighting the system I don't think I'm going to pursue it further. We also have less than a month left of school and we're moving before the new school year.

We've been watching The Princess and the Frog pretty much daily the last four days. I bought it for S. as a treat and she loves it. Tristan is scared by the character of Dr. Facilier, the Voodoo Man. Honestly, I don't really blame him- that dude is scary! He also didn't understand where Ray went when he was squished by Dr. Facilier. I tried to explain that Ray went up to the stars to be with Evangeline, but he didn't get it. I don't think Disney did any body any favors when they had that character squished.

Appointment with Dr. M tomorrow. I hope we're done tweaking Tristan's meds, but of course I'll update with any changes.

School Frustrations

We got up late yesterday and forgot to give Tristan's medication. Whoa, mama, was it obvious when he came home. I figured he had enough medication in his system that one morning wouldn't make a difference, but I was so wrong.

He came home from school and proceeded to turn somersaults in the living room and flip backwards over the couch for two hours. No matter how much I yelled, he just couldn't help himself. My couch is feeling the pain and I think I'm going to get a new one when we move in September. Any time I asked him to bring his toys upstairs, he attempted to get his sister to go with him. Since he often behaves inappropriately towards her if he thinks I'm not watching, that didn't fly.

I ended up giving him the medication so he could go to baseball without too much trouble. He had a good practice so it must have worked.

I had a meeting with his teachers this morning as to what the plan is if he has another tactile hallucination. Basically, the plan is; talk to him, if that doesn't work, remove him from the room. If he strips off his clothing, he goes to the nurse and I get a phone call. That's what they do already, but now it's written down so all of his teachers are on the same page. I personally think they are supposed to be redoing his IEP and 504 because his bipolar disorder is now affecting him in school, but they made sure to reiterate that the meeting this morning is NOT an IEP meeting.

I don't get these people. Tristan is hearing impaired AND has a language processing disorder, but his speech pathologist refuses to teach him any signing to help him out, saying he's "too vocal" and they don't want him to be reliant on signing. Instead they're teaching him things like "above, below, before." Those words will really help him when he's frustrated because he can't express himself. *insert eye roll here*

I've battled them since last year to provide services inhome because of his bipolar. The insurance doesn't cover it, saying it's the responsibility of the school. The school says since it doesn't affect him in school, it's not their responsibility. I don't care who does it, but someone needs to step up and help my kid out. No wonder the Hawaiian school system is notorious for being full of fail. I would fight with them, but school is over in a month and we're moving before Tristan will start second grade, so it isn't worth it in my case.

Last year, I requested a new IEP twice from Tristan's care coordinator due to the fact that he was diagnosed as hearing impaired and now wore a hearing aid. I was told twice that "it's not needed." When he was admitted to the hospital, they told me not to take "no" for an answer and to submit my request in writing and send a copy to the superintendent of the school. I did that and what do you know, we got a new IEP meeting very quickly.

I feel terrible for parents who don't know their rights. The school system does not want to help people who genuinely need their assistance. Handling people a little green booklet full of legal jargon does not help the average people understand their rights.

Don't worry, folks! I'll be working on a "Knowing Your Rights" posting and will put it up as soon as it's finished.