Sunday, November 7, 2010

A Tough Week, But A Better Weekend

We had a tough week.

Tristan was incredibly resistant to doing his homework. It took hours to do because he claimed that he didn't know how to do the math. I had to reteach him each step with every problem. With three children, I just don't really have the time to dedicate to teaching him like that. I'm trying a new approach; I give him beans to use to count the numbers. It seems to be helping out, so I'm optimistic.

Tristan was so high energy this past week, frantically running all over the place, randomly (and rhythmically) ejecting loud bursts of noise (usually roars.) I was so exhausted from dealing with him. I felt terrible because I just had no patience and ended up yelling at him a lot.

This weekend, I tried to make up for it. I let him lay in my bed with me on Friday night and I rubbed his back until he fell asleep. On Saturday, I let him come alone with me to Pennsylvania to purchase a storage unit for our dining room. He seemed really excited to leave his sisters behind. I let him get a donut from Dunkin Donuts for breakfast and he chose what we ate for lunch, as well.

His behavior seemed to improve and I'm going to make an effort to spend at least a few hours of positive alone time with him each week. I know it sounds like such an easy thing, but being as busy as I am, I don't even really get time to myself, much less with anyone else. I think it will be worth it, though, because it did seem to make a difference this weekend.

Tuesday, November 2, 2010

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.

Thursday, October 21, 2010

A Long Overdue Update

I recently had a family member tell me how much this blog meant to her. It really surprised me because I didn't think that many people read it, especially family members. I felt guilty because I've done you guys a real disservice in neglecting to update. I'm going to work hard to be better about that.

We've moved back to the mainland. I was really worried that such a drastic change would throw Tristan off, but he's handled it pretty well.

The week before we moved was a living hell. I understand why it was hard since his schedule was all screwed up, but he had some difficult behavior.

My daughter came downstairs one night after the kids had gone to sleep. She was crying and rubbing her eyes. When asked what was wrong she complained of vaginal pain. I had her lie back and examined her. She had a tiny abrasion. I figured it was from her itching (after all, five year olds aren't exactly champion wipers,) but she said that Tristan had used an ink pen on her.

I immediately woke Tristan up and talked to him about it. He, of course, denied everything, but when I told him Sofie said it was in the afternoon, he said "No, it wasn't! It was in the morning." He ended up being confined to his room the next day and has been under close watch since then. He is not allowed to play with his sisters unsupervised. If one of them is upstairs, he stays down. If he's upstairs, they're downstairs. It's exhausting, but it's what needs to happen for everyone to stay safe.

Now that we're back on the mainland, he really seems to be thriving. He's been playing outside almost constantly. Tristan is enjoying the cool weather and is learning new things about our new climate. Keeping busy outside really seems to help keep the bad behavior to a minimum.

Now the hunt begins for a new doctor. We close on our new house on Monday and will enroll the children in school that afternoon (hopefully, they'll start later on the same week.) I'm crossing my fingers we're able to find good doctors.

Friday, July 2, 2010

The Damaged Door

We've had a bit of a set back. Honestly, I wonder that it isn't because he's just bored.

Yesterday, Tristan had one of the worst tantrums he's had in a while. It's doesn't even get close to the ones he had about a year ago, but he still managed to tear up his bedroom door. At the time, I thought he was throwing toys at the door, but he told me today that he was punching it.

He kicked his sister and I told him to sit in time out. He refused, so I gave him a choice. He could go to time out or go to his room. He refused both. I had to call our neighbor over to watch the girls while I handled Tristan. He kicked and fought all the way up the stairs.

I finally managed to get him to his room. He usually rages for a little while, then calms himself down. When he's done raging, he knocks on the door to let me know he's ready to come out. He didn't knock and I went to check on him. That's when I discovered the door.

I was aghast at what I found. I simply couldn't believe he'd torn up another door. The door will cost $150 to replace. We're moving away in a few months and the housing office isn't going to want to fix that, they'll just replace it.

I know it doesn't look like much here, but remember, my seven year old made those with his fists.

When I found it, he hid from me in his closet. I didn't yell at him or spank him or anything.  I was just so stunned. I quietly told him how upset I was and that he would not be coming down from his room for the rest of the day (it was about 4:00 at the time.) He ate his dinner in his room, then put himself to bed.

This morning, C went into Tristan's room and removed all of his toys. He's grounded from video games for two weeks. We have a chart with money values on it and he will do chores to work off the $150 for the door.

Honestly, I'm not really sure what else to do. I can't decide if it's too harsh or not harsh enough. The last time he tore up the door, he was six and was very ill. We didn't make a big deal out of it because he ended up going into the hospital. This time, he's old enough to understand and face the consequences of his actions.

Saturday, June 19, 2010

Brief Update: More ASL and A New Wooden Sword

Well, I am way overdue for an update here.

Summer's already been really long and it's just been a few short weeks. I've been working hard keeping Tristan as busy as possible.

We're still going to our ASL classes. It's moving very quickly and it can be hard to keep up. I think it's been easier to get Tristan to understand what I'm wanting from him when we use sign along with telling him orally.

We implemented a sticker chart for him. He earns one happy face every hour that he does a good job. He decided that he wanted to work towards earning a wooden sword like his best friend has. He worked very hard and ended up earning that wooden sword! He was so proud of himself.

Obviously, we can't keep bribing him with new toys, but I thought maybe we could offer him things like extra one-on-one time with Mommy or Daddy, doing whatever he wants to do or time with the Wii.

Wednesday, June 2, 2010

First ASL Class

Our first ASL class was last night and it was a total hit! Tristan was fascinated by the other hearing impaired kids.

The class was taught by a deaf woman. She didn't speak, but instead taught through a combination of signing, gestures, written words and pictures. At first I was a little worried since I have no ASL, but I think it really helped me to understand all the nonverbal cues in ASL.

It's not just moving your fingers, it's using your whole body, your face included. When signing "hot," you make a face like you burned yourself. "Eat up" is gestured while your mouth makes the motion for "up," or swallowing, whatever way you look at it.

The positioning of the fingers and hands is so important. A single finger out of place or an extra motion can change the meaning completely.

We're just taking a basic class right now, but after we move, I want to enroll in another class to expand what I'm learning now. I am really enjoying the class and I really think it will help Tristan to see the words as well as hear them.

Tuesday, June 1, 2010

ASL, Summer Programs and Chocolate Cake

We start ASL tomorrow! The School for the Deaf called me back last week and offered family classes in American Sign Language for Tristan for $50. I immediately accepted. The only downside is that the baby can't go and I had to find a sitter for her. The classes are in the evenings, so bedtime routine is going to be messed up, but I'm willing to do that once a week to help Tristan communicate better.

Ms. C., the play therapist, highly recommended that we find a program for him this summer because he'll get bored with unstructured time and that could be a trigger. It's looking like there's no way out of shelling out $1000 over the summer for the program.

I should have a final decision made about summer programs by the end of this week. I think he'll be going to Kama 'aina Kids, which has offered to take him on without the aid on a trial basis. I think he'll be just fine as long as he's kept busy.

Tristan's been relatively irritable lately. Tonight, we went out as a family to The Cheesecake Factory. Tristan did so well. I looked him straight in the eye and told him how well he had done. He smiled, then asked for some chocolate cake. I don't usually get deserts at restaurants, but made an exception because of his excellent behavior.

Wednesday, May 26, 2010

Day Camp Bust

I've been calling all over this island today with no results. Apparently, a day camp program for a 7 year old with hearing impairment and bipolar disorder doesn't exist here.

I put in a phone call to a local day care that also does day camp. I'm waiting on a call back from their care coordinator to find out if they're equipped to handle Tristan's special needs. I don't know if they'll be able to provide his medication if I do enroll him.  I'm also waiting on a phone call from a resource here that is looking into programs for hearing impaired children. I'm crossing my fingers they can help.

I called Military One Source last night. I got hung up on after being on hold for ten minutes. I was so frustrated I wanted to cry. Anyway, I got an email from them this morning that announced they had been unable to find anything in the area. It contained a list of places I could call to ask about day camp. Honestly, I feel like I wasted time calling One Source. I could have gotten that list myself off the internet.

If we do find something that is willing to take Tristan, I worry about the cost. We're looking at a minimum of $1000. We'll have to dip into our savings account to pay for this. I was hoping there would be some resources to help us, but I'm not feeling too hopeful at this point.

C. doesn't want to pay out that small fortune for Tristan to go to summer camp. I think Tristan needs it, so if I can find anything, we're doing it.

Tuesday, May 18, 2010

Vog and A Visit from Grandparents

We had a much easier time for the last four days, but we broke that streak today. I was really feeling good about Tristan's mood.

As usual, we went to the play therapist on Friday. Tristan and I had a Mommy/Son session. We started with a foot massage (for him) and I told him all the good things he had done over the last week. Since we'd had a rough week, it took me a few minutes to come up with a lot of good things. I felt terrible about that because I know it must feel awful to only be scolded. I was reminded that when I do acknowledge Tristan for his good behavior, I need to make eye contact because of his hearing impairment.

We saw Tristan's psychiatrist yesterday and we discussed the difficulties of the last week. He was of the opinion that perhaps the vog (volcanic smoke/ash smog) or the pollen was causing allergies which exacerbated his symptoms. I guess that's feasible, considering it's almost exactly a year to the day that Tristan was admitted to the hospital.

The psychiatrist suggested giving him Benadryl when he exhibits allergy symptoms, but he hasn't had any noticeable symptoms.

Anyways, today was a rough day, with him tantruming all day. He was incredibly resistant to doing his homework. Everything was a trigger. We tried to get him to calm down, but he just screamed.

My mother-in-law is visiting and yesterday we did not get home until after 8 p.m. We didn't realize we would be out that late, so we didn't bring Tristan's evening medication. He fell asleep in the car on the way home and wouldn't be wakened no matter how hard we tried. So we ended up not giving him his medication last night and it may have effected his behavior today. We've seldom missed any doses and I can't ever recall missing his evening dose. All medication was given on time today, so we'll see if it makes any difference in his behavior.

This week and next will be super busy with my inlaws being in town. Hopefully, it's uneventful and peaceful for all involved and Tristan enjoys his time with his grandparents.

I'm looking into Reactive Attachment Disorder treatment and behavior modification plans at the suggestion of a friend to see if it might not help us. Trista doesn't have RAD, but the plans have helped other children.

Wednesday, May 12, 2010

Seeking A New Approach and Considering Summer Vacation

Okay, I think we might need a new approach.

Tristan tantrumed all day. Every word out of his mouth was argumentative and combative. It was exhausting.

He came home and seemed okay. As soon as I told him it was time for homework, he immediately flung himself on the floor and from that point, the day went downhill. I put him in his room, where he flung things at the door and kicked and screamed. Then he calmed down and asked to come out. This happened about three or four times before I finally insisted that he take a nap.

He napped for about an hour and I really thought he would wake up in a much better mood. He didn't.

He screamed and thrashed around. He didn't even really have a reason to rage. He was in his room screaming "Shut up!" over and over again. I have no idea who he was screaming at since everyone else was downstairs. I'm going to mention it to Dr. M the next time we go.

Summer is a mere few weeks away and I have no idea how I'm going to keep my sanity. We'll be moving in a few months, so pressing the issue with the school district (which does NOT provide services in spite of the fact that he exhibits symptoms at school,) is probably not worth. I'm going to look into some programs and see if I can't find anything remotely affordable.

Saturday, May 8, 2010

Mother's Day

I love Mother's Day. I don't love it because of breakfast in bed or jewelry, because I don't get those things. In fact, since Chris has to work tomorrow, I won't even get a break.

This is why I love Mother's Day:
Who needs a vase of real, expensive flowers when you get one of these? I keep all of the kids Mother's Day drawings and probably always will.

For all of you out there that mother, whether it be children, animals or plants, Happy Mother's Day.

Wednesday, May 5, 2010

The Hearing Aid Was Found!

Tristan's hearing aid has been found! I can't tell you how relieved I am to be able to type that out.

After the fiasco with the stash in the car, I tore apart Tristan's room. He had things stashed all over the place. I cleaned his toy box out. I hit his closet where I found dirty laundry and a huge stash of soiled pull ups.

Tristan still wets the bed. We don't make a big deal out of it since he's on medication that really knocks him out at night. We put him in Good Nites to make him as comfortable as we can while he's sleeping. It also cuts down on laundry and reduces damage to his bed. We've tried to just let him go to bed without the Good Nites, but he sleeps soundly til the morning regardless. Being wet just doesn't wake him up.

Anyways, I pulled everything away from the wall and went through every square inch of his room. I finally found the hearing aid stashed behind his toy box. I was so relieved to find it. We checked it out to make sure it was still working, and it was just fine.

I made him clean out all those disgusting Good Nites and explained for the umpteenth time how gross it was and that I wasn't mad that he wet the bed, he just needed to take care of it. I really wonder what's going on with this hoarding-like behavior.

Saturday, May 1, 2010

Foot Massage and a Hidden Cache

The past two or three days have been relatively uneventful tantrum-wise, thankfully.

We saw Dr. M on Thursday and I expressed my desire to leave Tristan's medication alone for the time being. I told him also that if we decided that the medication does not work, then instead of adding anything, I'd like to try something new. Dr. M completely agreed with me and was supportive of my plan.

We saw the play therapist, C., on Friday, as usual. She wanted us to have a mother/son session, and since my husband was there to watch the girls, I agreed.

She started us off by having me give Tristan a foot massage. He seemed to enjoy it but wouldn't look me in the eye while I was rubbing his feet. After the foot massage, she wanted me to cradle him and just hold him. He was having none of that. I guess he wasn't into being treated like a baby. I know I personally feel very vulnerable in the prone position like that.

We played with the doll house for the remainder of the session. Tristan made up a very elaborate story about our family running up the hill away from a terrible storm. In the story, Tristan flew himself, Daisy (our dog), his middle sister, S., and his goldfish in a helicopter up the hill. My husband, myself and the baby, W., rode in a police car (which was supposed to be a regular car in the story,) up the hill. He had to fix the car and the house in the story. C. pronounced that Tristan is working on "fixing things" internally.

This morning, Tristan woke up on the wrong side of the bed. He argued almost constantly and about everything until finally, I told him I wasn't taking him to his baseball game in such a mood. I told him that he needed to stop arguing and back-talking and I would reconsider. He started screaming and thrashing around, no matter how much I tried talking to him and explaining what he needed to do to be allowed to go. That was a complete failure. He ended up throwing an enormous tantrum. He went to his room for a while to calm down and came down in a better mood.

In related news, we discovered he's been hiding things in the car. His school folders have been missing. I couldn't figure out where they were since they'd disappeared somewhere between our house and school. I noticed a wrapper sticking out from in front of his seat in the back of our SUV. Upon further investigation, I found all the missing homework, folders and all kinds of food and snack wrappers. I was livid.

Not only had he hidden the homework, all that food in the car attracted bugs and other disgusting things to our car. I try so hard to keep our SUV clean, since, let's face it, roaches thrive in Hawaii. Just about everyone has them, whether they are aware of them or not. We've had the Honda for two and a half years and had no bug problems until now. Our neighbor told us they need to bomb their cars at least a couple times a year and everyone in Hawaii has that problem. I'm not convinced, but it did make me feel better.

We bombed the car last night per our neighbor's advice and showed Tristan the evidence this morning. I wanted him to understand why we don't have food in the car. He was horrified (even though the problem really wasn't as bad as I thought it would be.)

On second thought, since he has those bug hallucinations maybe I shouldn't have shown him that...

Still no sign of the hearing aid. I think on Monday, I'm throwing in the towel and calling the audiologist. We may have to eat the $2000, but Tristan not being able to hear is driving me (and him) nuts. He admits he hid it, but says he forgot where he put it.

Wednesday, April 28, 2010

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.

Saturday, April 24, 2010

Pickle Policeman and Rollercoaster Behavior

Tristan and I had a play therapy session together yesterday. We discussed touching and then made masks. He made a bad guy mask with many eyes while I made a green, freckled mask with policeman sunglasses. C. asked me what my mask was, so told her it was a "pickle policeman." We played out that the pickle policeman arrested the many eyed bad guy and locked him up in a lock box. It was pretty fun.

We've been having some extreme behavior. Over all, he's doing pretty well.

Yesterday, he threw a tantrum because he didn't want to sit in time out for kicking his friend. After the tantrum, I let him out of his room and put him back in time out. He seemed shocked I wanted him to sit in time out after throwing such a tantrum. I don't know why he would be shocked or confused about that- it isn't anything new.

Anyway- extreme behavior...He's been going from doing great and having no issues to suddenly exploding and having a major tantrum. I think I like it better this way than the tantrums broken up by constant movement and defiance.

He's also been saying things like "I have to beat up _____," when he gets upset with someone. He hasn't actually done it, so I am thankful for that. Maybe he's just expressing how he feels so he doesn't hit anyone. If that's the case, I'm proud of him for being able to express that.

Now he's playing Logo, a computer game designed to teach children how to program, with his dad and sister. He doesn't usually have the patience to play a game like that. I really do think we're on the up.

Thursday, April 22, 2010

Tristan and the Case of the Missing Hearing Aid

I'm feeling optimistic. Tristan had a great day!

He came home, had snack and did his homework with little trouble. He was able to play outside for a little while before baseball practice. He got in trouble for throwing rocks (which he knows is strictly forbidden,) and sat in time out like he was supposed to- no tantrums!

Still no sign of his hearing aid. Last Thursday, he did not pick up his hearing aid when I asked him to, and his baby sister picked up the hearing aid off the floor and sucked on it. The battery compartment opened and she swallowed the battery. Needless to say, we had an hasty run to the emergency room where a quick x-ray revealed the battery floating in her tummy. We were all terrified and I think it really impacted Tristan more than I initially thought.

His teacher called me yesterday and told me that he'd been talking about it at school. We talked for a minute and it occurred to me that maybe he had hidden the hearing aid. I've scoured his room to no avail. I asked him about it and he admitted that maybe he had hidden it, but couldn't recall where he put it.

I've been telling him that we're not angry at him and it wasn't his fault that the baby ate the battery, but that it's important not to leave his hearing aid lying around. It's hard to say exactly what's going on in his head, but I'm hoping he doesn't feel guilty.

I'm just hoping that hearing aid shows up soon, otherwise we're going to have to shell out a couple thousand dollars for a new one.

Tuesday, April 20, 2010

The Very Touching Book and The Token System

The play therapist gave me The Very Touching Book to read to Tristan. It's a book about the three kinds of touching; good, bad and secret. She felt it would help him understand the right way to touch his sisters and I.

Tristan tends to be aggressive with his touching. He has an almost constant need to rub and touch people and it can border on the inappropriate. His psychiatrist feels it's a symptom of his bipolar and that seems to fit.

Anyways, reading that book this evening made me feel like a twelve year old boy. I really tried, but I couldn't help but laugh. The drawings are anatomically correct and seem a bit graphic. The preface at the beginning of the book explained that it's important to empower children with information about their own bodies, which I completely agree with. It's just difficult to encourage the kids to say "penis" over and over again until there were no more "purple faces." Of course, the only purple face was mine.

C., his play therapist, wants us to start him on the token reward system again. Basically, for every set period of time he stays on task and follows the rules, he gets a token (or sticker, etc.) He can use those tokens to "purchase" video game time, trampoline time, story time, or special snacks or time with one parent, etc. It really works well for Tristan, and I do think that most kids do well with such tangible, positive reinforcement. We have a stash of poker chips that we use for this purpose. Tristan likes to hold his tokens in his pocket and to count them. We're going to start the system again as soon as we have a down day.

Tristan lost his hearing aid. He's severely hearing impaired on the left side and he really needs that hearing aid to get the most out of his classes. I'm really hoping it turns up soon, because those bad boys are expensive!

Thursday, April 15, 2010

One Hell of a Day

I'm hesitant to write this post because I'm still optimistic that today will be better.

Tristan had one HELL of a day yesterday. He seemed okay on the way home. Once we got home, I ran the baby up to her bed for a nap, then ran back outside to unload groceries while Tristan and his sister hung out in the living room. While outside, I heard S let out a blood curdling scream and I ran back inside. Tristan had bitten the crap out of her!

When asked, neither one was sure why he had bitten her. He couldn't explain and apparently, there was no disagreement prior to the biting.

When I attempted to put him in time out, it was the beginning of a two hour battle. He screamed, thrashed and broke things. He back flipped off the couch. It was terrible. He would calm down just to find something new (and ridiculous) to rage about. When he finally calmed down, he sat in time-out for biting S.

His play therapist called (I swear, that woman has ESP or something,) and told me that she thought he might be attempting to manipulate his way out of time out and homework and that I was handling the situation well. That's always good to hear because I worry that I could be handling things better.

The rest of the day was pretty intense with defiance, and resistance to just about everything, but he didn't have any more tantrums...until 3 a.m.

He woke up S by climbing into her bed at 3 a.m. She came and got us because he is not allowed to sleep in her room due to his past behaviors towards her. He did not want to go back to his room and had another tantrum for another hour. He screamed and started pounding on the floor. C ran into the room to stop the pounding since we have neighbors that share a wall and we didn't want to wake them or their children.

He finally went back to sleep at 5 a.m., only to wake up half an hour later. I'm pretty sure he'll come home from school in a foul temper, grouchy from lack of sleep and already angry.

I can only home he comes home in a good mood. If not, he'll certainly be taking a nap after he gets home. We'll see his play therapist tomorrow and see if she has any new ideas.

Tuesday, April 13, 2010

Game in Kaneohe and Med Change

New medication change. Good grief- let's hope this works! I'm pretty sick of tinkering with Tristan's meds.

So, to recap, Tristan is currently on:
100 mg Seroquel at 7 a.m.
50 extended release Seroquel at 12 noon.
100 mg Seroquel at 3 pm
200 mg Seroquel at 6
150 mg Depakote at 6

That is a ton of medication!

Anyways, towards the end of the day, Tristan had been having a tough time winding down. It was somersaults all over the living room again. The doctor theorized that it was at the end of the 18 hour window for the Depakote, and prescribed a little dose of Depakote to get him through the rest of the day. It seems to be helping and the somersaults and frenzied, frantic movements have stopped.

At this point, if this doesn't work, I want to try something new instead of adding anything new into his current regime. It seems like an enormous amount of medication and he's only seven years old.

Tristan had a pretty good weekend. He had a baseball game in Kaneohe and I think the whole family enjoyed sitting out on the grass with the gentle sea breeze. He got hit by the ball at one point, but walked it off. He was so happy to be playing baseball and kept looking over to see if I was watching him.

We had baseball pictures taken on Monday and batting practice afterwards. He kept asking me if I was proud of the way he played. I told him over and over again that I was proud of him no matter what, whether he played baseball or not. Sometimes we all need to hear that we're loved no matter what, and he is no exception. He really is an awesome kid.

Thursday, April 8, 2010

Bipolar or ADHD?

Today, I dropped by Tristan's school to talk to the nurse about his new medication routine. To my surprise, the nurse had a son, now 19, who had been misdiagnosed as ADHD and struggled for most of his late childhood and adolescence before being diagnosed as bipolar. She said the difference after mood stabilizers was "night and day."

Her struggle and heartbreak sounded eerily similar to mine.

In the past few years, there has been a backlash against ADHD/ADD as a diagnosis in children. I've had doctors tell me that they're finding that more children are being (possibly) misdiagnosed as bipolar because the symptoms are so similar to those of ADHD/ADD. Bipolar is now the "in" diagnosis to get.

I don't think this is occurring because of a trend; I think doctors are getting better at diagnosing bipolar disorder. It was once thought that bipolar was an "adult" disease.

Here's a list of bipolar symptoms in children:
*silliness, goofiness, giddiness
*fidgetiness/ restlessness
*rages/explosive temper tantrums
*racing thoughts
*aggressive behavior
*oppositional behavior
*isolation from peers
*learning disabilities
*compulsive behaviors
*excessive daydreaming
*lack of organization
*destruction of property
*rapid or pressured speech

Symptoms of ADD/ADHD:
*talks excessively
*rages/explosive temper tantrums (typically borne out of frustration or overstimulation)
*lack of organization
*aggressive behavior
*rapid, sometimes inappropriate speech
*isolation from peers

It's easy to see why bipolar disorder can be confused with ADD/ADHD. The main difference, to me, is that the ADD/ADHD symptoms are constant, whereas the bipolar waxes and wanes.

The treatment for ADD/ADHD (stimulants) can often exacerbate bipolar symptoms. Of course, many doctors and parents may come to the conclusion that the medication isn't working and will run the gamut of stimulant medications. It is working, of course, just not the way it was expected to. Bipolar medication in ADD/ADHD patients typically are sedating, which may appear to help the ADD/ADHD symptoms.

Bipolar disorder and ADD/ADHD can coexist. If they do coexist, it's important to treat the bipolar symptoms first so as not to have the symptoms become out of control.

I think that it will become more and more common for children to have diagnoses of bipolar disorder as more is learned about this illness. Whether that's a good thing or not, I couldn't say. I don't think it's right to diagnose children with bipolar just to put a name on a symptom.

There's been such a backlash against Ritalin and ADHD and I have encountered many children that have struggled with school and hyperactivity. When asking their parents about it, many times I've been told "He's just a little active, that's all. I'm not throwing medication at a kid that's just a little more active." While I completely agree with that ideal, if a child is genuinely struggling in school and can be helped by medication, why not help that child to their full potential?

My main issue with this is that I wonder; can't we find a medium ground? There must be a way to distinguish true bipolar diagnoses from true ADHD diagnoses. Doctors need to be trained to distinguish the difference to the best benefit of the child. I think that getting better at diagnosing correctly can help make a child's life richer and enable them to have more common experiences among children, to live a more "normal" life, if you will.

I think of the past few years with Tristan and how he's been volleyballed between diagnoses. All that time wasted while doctors had verbal fisticuffs over what to call his symptoms. We certainly could have filled that time with better things and I know there are other parents and children out there having the same fight.

Edit: Tristan took the new dose of medication at school and had no problems doing his homework today. Hurray!

Wednesday, April 7, 2010

Baseball and Medication

C took Tristan to see Dr. M yesterday. He came home with a new prescription. Apparently, taking the medication (Seroquel) in the morning and at 3 p.m. is leaving a huge gap, allowing symptoms to break-through.

Tristan will be taking an extended release version of Seroquel while at school, so he doesn't come home amped up. We'll be starting the new dosage tomorrow and of course I will update here if there is a discernable difference. I'm really hoping it works because even C was frazzled by Tristan's homework tantrum today, and he didn't even have to handle it alone, as I usually do.

We managed to make it to Tristan's baseball practice today. He is so good! I never get over how he can hit the ball so well, even when it's pitched by machine. As we were walking back to the car he said, "Mama, did you see me hit the ball?! I hit the ball a lot of times! Did you see, Mama?" He was so excited and skipped along next to me, holding my hand.

The baseball game on Saturday is out in Kaneohe. I am not looking forward to driving out there, but wouldn't miss a single game when he enjoys it so much. This is his fourth season of baseball and as long as he keeps enjoying it, we'll keep going.

Tuesday, April 6, 2010

Afraid of Homework

Oh, what a day!

Tristan came home from school in rare form. His communication notebook had nothing written in it, so he must have had an okay day at school.

I let him get a snack as soon as we got home, like every other day. After snack, he refused to do his homework, telling me, "I'm scared." When asked what he was scared of, he stated, "My homework scares me."

This is a new excuse. I tried helping him, but he started to scream and cry. He threw himself on the floor and thrashed around. I gave him the option to calm down and do his homework, or go to his room to calm down. He just continued to scream, so I picked him up (not an easy task,) and took him to his room.

Once in his room, he kicked the door and jumped up and down on the floor for about thirty minutes. After he calmed down, he knocked on his door, which is the way he tells me he's calm.

Even after he was calm, he was still incredibly defiant. Everything I asked him to do, he said, "No," to, regardless of what it was. I gave him his medication on time and could tell when it started to work, because he happily sat down and did his homework without so much as a peep. He has an appointment with Dr. M tomorrow and I'm going to see if we can't adjust the time he gets his medication, or maybe see if there's an extended release version.

I've been alone for the past three days, since C had to work over the weekend. He had another work thing to do today, so I was alone with the kids for two hours today. I think I just needed a break, because my patience had just worn out and I didn't handle Tristan as well as I could have. I almost wished that I smoked so I could take a five minute breather away from the kids, just to unwind for a minute.

After C came home, I went to our room for a few minutes and read something frivolous and light.

I made our Easter dinner today since C wasn't home for Easter. I made a ham and Tristan started dancing around the kitchen asking if I was making bacon. Tristan loves bacon (but then again, who doesn't love bacon?) He didn't seem to understand what I was making, even though he's had ham on other occasions. At dinner, he ate a ton of ham.

After bathtime (and medication,) he pulled his sister on top of him about three times before I finally sent him to bed. I'm not sure why he does this, but it's against the rules as she doesn't like it and I find it inappropriate. His doctor feels that it's because he's hypersexual as a symptom of his illness. I see why he would think that, but I think it could possibly be some kind of impulsive/compulsive need to touch.

I'm just glad today is over and I'm ready to start a new day.

Sunday, April 4, 2010


Easter Morning. The kids were really excited that I let them eat chocolate for breakfast. They both went for the giant hollow chocolate bunny. C. gave the baby a lollipop which subsequently attracted every piece of carpet fuzz and dirt in a 50 foot radius. She still cried when I tried to take it from her.

We've had a difficult morning with Tristan rolling somersaults across the living room again. I gave him five chances to stop rolling across the floor before I finally grounded him...on Easter. I realize it may seem a little ridiculous to be up in arms about a somersault, but he has kicked both his sisters and myself in the face while somersaulting. It doesn't feel good and he actually made the baby bleed.

He continued to roll around on the floor, so I gave him the choice to walk to his room for a time-out or to be carried/dragged by me to his room. He immediately began protesting, which turned to blood curdling screams as I picked him up to take him to his room. I locked the door behind me (we have the lock on the outside for these reasons.)

He began to jump up and down, making as much noise as possible, while screaming and pounding on the walls and door.

When we went to see Dr. M last week, he suggested we give Tristan his medication in a different schedule; 100 mg Seroquel at 7 a.m., 100 mg Seroquel at 3 p.m., then 200 mg at 6 p.m. along with his Depakote. He wanted to try that to see if he'd do better if he was covered by the Seroquel all day. I'm not sure it's working because he sure has had a tough time lately with listening to and following directions and being still. His movements have been frantic and frenzied.

Yesterday, we had the first baseball game of the season. Tristan did very well, hitting on the second pitch. He's the youngest kid on his team, having turned seven after the season started. All the other kids are seven and eight years old. He's not the smallest kid on the team, though. He's always been on the bigger side, being taller than average. He seems to have a knack for baseball, which he didn't get from me.

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.