Wednesday, March 31, 2010

Homework Woes

Tristan did get his medication this morning, but he still came home to turn somersaults and cartwheels in the living room. I'm wondering what's going on with him.

Homework has been a battle. We do thirty minutes and take a break. If he's in a good mindset, we attempt to do more homework after that, but he frequently isn't.

Yesterday, I went to pick up some baseball socks and new clothes for the girls. When I left, Tristan was sobbing hysterically on the floor screaming that he couldn't do his homework. I called 45 minutes later and Tristan was still screaming. I asked C. if Tristan had stopped at all, but he apparently had been screaming the entire time.

I got home about a half hour later and opened the front door to find Tristan rolling around on the floor screaming. He wasn't even really sure what he was screaming about at that point. I asked him if there was something he wanted.

He mumbled something about wanting a banana.

"Well, have a banana, then, Tristan," I said, " but then, you need to go back to your homework."

"But it's too HARD, Mommy! I can't do it! I don't know how!" He screamed.

"They gave you homework that you weren't taught in class? You've never seen this kind of work?" I asked. He nodded, but it tentative, not enthusiastic, so I knew he was lying.

I gave the homework another shot, but he started throwing himself on the floor and screaming, so I threw in the towel.

I hate just giving in because I know that's EXACTLY what he was aiming for, but we have to pick our battles with Tristan. He lost the privilege to play outside for the day because of the homework situation. I hate doing that because he needs to be able to run off some of his energy.

We also have an arrangement with his teachers that if his homework is incomplete, he stays inside during recess to complete it. I just don't get it. I know he can do his homework. I know he must hate missing out on playing with his friends.

We have an appointment with Dr. M, his psychiatrist, tomorrow, so I guess we'll come up with a game plan then.

Tuesday, March 30, 2010

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.

Sunday, March 28, 2010

The "Not A Bill" Bill

We got a "This is not a bill" bill from the hospital stay a few weeks ago.

To recap, a few weeks ago, Tristan had a tactile hallucination at school that ants were crawling all over him and he promptly stripped his clothing off in the classroom. Thankfully, he was in his special education classes at the time and there were only four children there at the time (and I'm inclined to think they might be used to unusual behavior.)

His psychiatrist urged us to take him to the ER, which we did. The ER persuaded us to allow him to be admitted. We had already been discussing having Tristan admitted for 7 days to introduce depakote quickly in a safe setting, so we agreed. Unfortunately, his doctor was called away on emergency leave to the mainland the same day Tristan was admitted, so we were at the mercy of the doctors at the hospital.

Tristan's birthday was the following week and we promised him he would not be in the hospital for his birthday. And why should he be; he wasn't unsafe.

We admitted him with the understanding that he was there simply to begin the depakote. We expressed that to the admitting nurse, his social worker (at the hospital,) and the attending doctor. They initially agreed, but the doctor decided he didn't want to do it that way.

Dr. B wanted to take him off all his medications and start fresh. We did that last year when Tristan was hospitalized for four months while I argued with doctors.

At that unit, they took him off his mood stabilizers and put him on Concerta. Their theory was that Tristan was "merely" ADHD and the Concerta would control his symptoms. They kept insisting that "bipolar diagnosis in children is very controversial and we don't like to put that name on it." My thinking was, if it fits, why wouldn't you put that name on it? When the Concerta didn't work, they attempted to teach him behavioral management skills. They did this for FOUR months while I kept telling them that it wasn't working. He was having just as many, if not more, violent outbursts. (Let me tell you, hearing your six year old screaming "Mommy!" as the aids dragged him away is heart wrenching.) I finally bullied a resident into giving him a mood stabilizer and within two weeks, he was released and stabilized. It was an "I told you so" moment, but not one that I relished.

So, anyway, I was not about to let Dr. B throw things at the wall and hope they stuck. I knew what our goal and objective was with admitting Tristan this time and wasn't going to deviate at all from that. I argued with Dr. B for two days before having Tristan discharged against doctor's recommendations.

He's had four subsequent hallucination episodes, all including one kind of insect or another. He's insistent that he sees the bugs, which is what scares me.

He was put under the care of a "new" doctor. Dr. M initially diagnosed him as bipolar when he was five and I am glad to be under his care again. Dr. M, to my delight, immediately took Tristan off the Concerta, with no ill effects, and put him on the depakote on an outpatient basis. Dr. M's theory is that the Concerta was causing the hallucinations. Tristan has had one since ceasing the Concerta, so I'm not sure how convinced I am about that, but we can handle the hallucinations at home, since he isn't unsafe.

The "not a bill" bill is scaring me, though. I hope our insurance will cover it, even though we went against doctor's advice. The last facility was about $37,000 a month. If I divide that by thirty days (in a month) we're looking at approximately $2500 for that two day stay, assuming they charge the same rate.

Last time, we also received a bill for the ambulance (they won't allow us to transport Tristan if he's been admitted from the ER.) That bill was $1500! I wish I got paid $1500 to transport a six year old boy twenty minutes down the road. Once I called the EMT company, they resubmitted the bill to our insurance, which covered it, thankfully. He was transported this time by that same company, so I really hope the ambulance is covered, too.

Seriously, it's not bad enough dealing with an illness like this, it's expensive, too!

Saturday, March 27, 2010


Tristan is seven years old and has bipolar disorder. He's been hospitalized twice, once for four months. He's currently on a medication regime that includes Seroquel and Depakote and it seems to be working.

I'm starting this blog because I know there are other families out there that are dealing with this same thing. Families that may not understand the treatment options or how to handle doctors with nasty cases of "God Complex."

It's not easy. People have told me everything from "You just don't love him enough," to "It's food allergies. If he were on the proper diet, he would not have these problems."

It's heartbreaking to hear these things from people, especially people who love you. People could never understand what's it's like dealing with a child with bipolar disorder unless they have lived it. It's not about loving your child enough or being ineffective with discipline. It's a documented medical problem that isn't treated by spanking or more attention. It needs medication to manage, much like diabetes.

Sometimes I watch Tristan and I can see the turmoil going on inside his mind. His mind is so unquiet and it breaks my heart that he's going through this and I can't fix it. Managing Tristan and his sisters every day can be very difficult. It's hard to balance the attention he needs with the attention his sisters need. At the end of the day, I am often so exhausted that there isn't anything left for me. But I know this is worth it. The medication, the strict adherence to routine, the doctor's appointments, the therapy, it helps him manage his illness and it is worth every moment that he is not in turmoil or pain.