Tuesday, March 22, 2011

A glimmer of hope

On Monday we had a follow up psychiatrist appointment. Its hard to believe but it has been 3 weeks since we first seen this new doctor and got our new diagnosis! There have been great changes in our lives since this new medication finally started to work. It's like a completely different child that I'm dealing with now. In school he's doing better, he's handling everything that he wasn't handling before better. We still have our bumps in the road, don't get me wrong, but things are turning around. Not only is he on a medication that is making him a happier child, I'm now on a path to understand his illness better. For the last 3 years I've been focusing on ADHD, now I have to refocus on Bipolar Disorder. Now that I have a new set of books to read, its all making sense. Why the "stratagies" and "techniques" for helping and working with ADHD kids didn't work with mine. Why some of the things my kid was dealing with, other ADHD/ODD kids weren't dealing with. It all makes sense now!
Now with the bigger picture in mind, we talked about the future. She gave me a glimmer of hope! She was telling me about recent studies and their findings. She said that if children are treated at a young age with the correct medication and treatments that it is actually changing the patterns in which their brains work. Changing them to a more "normal" brain state. She said that they are finding that the brain stops changing and growing at about age 25. I'm not doing this any justice with the technical terms at all but with the medication helping for so many years, it changes the brain, for the better, that the people in these recent studies are able to go off medication( or stay on a much lesser dose) at about 25 years old..When she told me this I was so excited! It means that we might not face a lifetime of pills. There is hope that he will get "better" not, cured, but better!! That makes me happy. But for right now, we will focus on right now and our near future and stick to the many pills we take in a day. I'm attaching a picture of the pills he takes, just at night. He takes a couple more in the morning.

That is 6 and a half pills if you can't see it...But we will get through! There is a light at the end of our tunnel! No matter how long that tunnel is!

Monday, March 14, 2011

Two Steps Back

Well, we had a good run going. Then BAM! We hit a wall. Spent half the day in the principles office again. He got angry over such a tiny thing. Something with his paper. I pray tomorrow is better. Its very discouraging but I know its the road we are on. Its a very scary, curvy  and broken road. We are trying to repave it but its one step at a time. I try not to get discouraged so much but its hard. Every day that is like this is shaping Landen's view of school and authorities and his future. Am I doing the right thing? I constantly wonder. There is not enough time in a day to understand and learn all that I need to about Bipolar Disorder. If only there were 36 hour days..

Sunday, March 13, 2011

Acceptance

Acceptance according to the dictionary is, among other things, favorable reception; approval; favor. That being said, its easier said than done. You can say that you accept something or someone but truly are still judging. Having a child with special needs that are in his brain and not physical is opening my eyes to some of the judgements that fall on people who are "different". Is it harder to deal with acceptance in your own family or with friends and acquaintances? I'm in the process of trying to figure that out. You can explain to people what is going on and they can even witness a rage but unless they walk in your shoes daily, it's truly hard to understand. As a mom, I'm having a hard time with acceptance as well. I have to accept that my son will never be "normal" as such. There will always be struggles that we will deal with and things that we will be unable to do. There will be times when we will not be invited to family things because of the dynamics of our situation. I need to accept that and be okay with it.
This is always a a good lesson to learn. Do not be quick to judge. I'm trying really hard to stop my immediate judgements of others because I don't know their situations. We don't know what is going on behind the scenes. Will it bother me when I get concerned looks or see shakes of the head when we are out in public and an outburst occurs? It sure will. But will I let it get me down and ruin my day? No, because I know after the outburst is over and things calm down, he will still be my loving little boy. I will never judge him. I love him very much.

Friday, March 11, 2011

The Good, the Bad, the Ugly and the Hidden

This is what I imagine the inside of Landen's head to look like...Absolutely beautiful, yet scary and unpredictable. At any moment lightning can strike and start a fire or a tornado can come out of the clouds. Such a chaotic mess yet beautiful. Hence the name of my blog.
The Good: The medication is working for Landen. He is a different kid, most of the time. He's happy, handling things much better than before. Everything isn't such a struggle anymore.
The Bad: The side effects of the meds. The nausea, the dizziness and the headaches. Its honestly a small price to pay for the good, in my opinion. He will get used to it after a couple of weeks, so I'm told.
The Ugly: Even with all the good that's going on, we are still having rages. In public places, for things that seem small. I know this is a give and won't go away but still, hard to handle. The yelling, the spitting, the hitting and throwing and the anger. Even though I've been dealing with it for years, its hard to get used to.
The Hidden: The emotional toll this is taking on me, as the mom. The one who gets to hear "I hate you, you are a terrible mom! I want you to die!" right after I've gotten a huge and a "I love you mommy". The ups and downs and twists and turns..I'm riding a roller coaster that I can't escape. I "shut off" shall I say when he rages because I know its not "him" and I try not to let it bother me. I can't let it bother me because if I did, honestly, I'd be suicidal. Does it bother me? Yes, but i don't let it show. When he's raging, I'd like to crawl under a rock. Especially if we are in public. I really need to accept that it doesn't matter what people think, let them think what they want but its still hard. The guilt and the every day wondering if I'm going to say or do something that will set him off. The heartache I feel when he's in tears calling him self a dummy and saying that he wishes he would die. At 6 years old, this is too much. I cry with him, in my heart. That's what I keep hidden. Other parents of Bipolar children will understand. You can't show all of your emotions to your child. Its too much for them.

Wednesday, March 9, 2011

Listening and Being Told

Tuesday was ANOTHER good day for Landen!! The changes are nothing short of miraculous in my book! No yelling, hitting, crying, punching or throwing things when he needed help erasing the "n" he wrote wrong(according to his OCD self). He is happy! I can honestly say, and it saddens me in a way, that I have NEVER seen him this happy in his life. I say it saddens me because for over 6 years this child has not been well enough to experience this! It makes me totally happy.
Another thing I'm noticing is that he's listening to directions better. "Pick up your underwear and put them by the washer, please." only came out of my mouth once and the task was completed! WHOO HOO!! I'm totally happy about that! I don't know if that will change or not but I'm not going to question it, we are just going to roll with it for now.
At school he is helping other kids learn their sight words. I'm so impressed. He is getting all his work done and helping other kids with theirs. He's not getting upset when he can't do a problem or if he messes up. He's asking for help and that is awesome!
He's being wonderful with Lily and with me and with everyone he's coming in contact with. Everyone is noticing a difference. I'm estatic! This is the child that was hiding inside him waiting to come out!
Last night I was put in my place by him. I was frustrated (Can I chalk it up to PMS?), Lily was being just plain annoying and not listening. We were playing Rock Band and lily kept talking to me. I yelled at her and told her to "shut up!" Then she dropped the guitar on her foot and started crying. I wasn't happy, I was doing lots of yelling, I will admit. Landen got very sad. I asked him what was wrong. He said "I'm sad because you are yelling too much. I don't like it when you yell." My newly found happy boy has now realized mommy's downfall..I'm a yeller.. I'm going do to my best to not yell as much..But, you know how it goes, especially with  a 3 year old..it sometimes isn't all that easy. But for Landen's sake, I'm going to try my hardest to learn to talk calmly and not yell. It's the least he deserves.

Tuesday, March 8, 2011

One Step Forward

I am marking this on the calendar! March 7th, 2011. Landen had a WONDERFUL day at school! He was in his classroom all day! He helped pass out papers, asked his teacher when he needed help instead of having a meltdown. Some may not see the importance in these things but these are HUGE steps for Landen. It was day 5 of medication also. When he came over the overpass he was all smiles, he gave me a big hug and said "I had a great day!" I was soo happy I nearly cried! He also told me "The big blue X inside me filled all the way up and exploded mommy! I'm so happy!" I teared up when he said this. I have not seen this happy child in such a very long time! He breaks it down like this: The blue X is happiness and the green X is his anger.
Yesterday was also parent-teacher conference day for us. His teacher was so excited about his day! She said he was better than he was at the beginning of the year. He was smiling all day she said. He is doing really well in school, even considering what we have been through since the beginning of the year. I'm so very thankful that he doesn't have a learning disorder on top of everything. He is at the highest reading level in her class, he has surpassed all the math addition and subtraction tests. She's moved him onto second grade ones. All in all, a very good report card!
I know this is only one day. But ONE DAY gives me HOPE. It means there is a silver lining, that things can get better. I know that they won't always be wonderful but having the continued hope that they have the potential to be better will keep me hanging on. It will help with the bad days and make the good days better.
Little steps is what he took today. Many little steps all day long to make one giant leap forward!

Saturday, March 5, 2011

A little history

I thought that I'd take a little time to give some background to those who are reading this blog to tell you how we got to this point. Lets go back, way back..Well, not really, just about 7 years back.
In early September 2003 I found out that I was pregnant. HUGE SURPRISE for me. I won't go into details but measures were taken to prevent pregnancy..Obviously, God had other plans.
My pregnancy was pretty normal, I think. Compared to my second the only difference was that he moved sooo much more than my daughter. Also when I was about 20 weeks and had an ultra sound they found a "spot" that was concerning to them. I was told that it could be nothing or it can sometimes be a sign of down syndrome or something similar. I turned down an amnio. They did another ultrasound at 28 weeks and the "spot" was gone. Other than that, everything was normal.
My world was forever changed when he was born on May 14th, 2004 at 2:43pm. He was my world. A few weeks after he was born the non stop crying started. For hours on end..into the night..My mom and I would take turns walking and shhing him..crying, crying and crying..Diagnosis: Colic.
Lets fast forward a bit..He crawled on time, walked at 13 months(on my birthday!!) and seemed like a normal baby. When he turned 2 and only said a few words, I was concerned. We found out from the ENT that his adenoids were so infected, it was affecting his hearing. So he had surgery to remove those and within two weeks started talking up a storm!
When he was about 18months or so, he started having tantrums..Which is not uncommon for kids his age. Except his lasted for over an hour most times. You couldn't calm him down, couldn't distract him like most other kids. I thought it was strange but people told me it was because he was nonverbal.
After he started talking and expressing himself better, I thought that the tantrums would get better, but they got worse. He started hitting and kicking and biting me alot..Things had to go a certain way or he would get angry. Clothes had to go on in a certain order. I walked on egg shells because I didn't want him to have a tantrum. People told me it was my fault. That I needed to discipline him. I did. I put him in time out, took things away and spanked him..nothing worked.
In Dec of 2006, I got pregnant with my daughter. Things only got worse. The tantrums, it was more like abuse. We would be sitting together reading a book or something and he would snuggle with me, then the next minute, punch me in my face! For no reason! When he was having a tantrum, anything he could throw or bite or grab, he would. You would have to hold him down while he was having a fit in order to keep things from getting broken, him hurting you or from hurting himself.I asked the doctor about this and he told me that Landen was reacting to my being pregnant. He did recommend a therapist. So we went to this this guy. He proceeded to tell me that I need to lock my son in his room while he was having a tantrum and not let him out until it was over. Well first of all, we lived in an apartment at the time and all his toys and such were in his room so that wouldn't work. Second, he hardly wanted to go into his room to sleep so if I used it as a timeout room, he'd never want to go in there! Needless to say, we didn't listen to this guys advice.
My daughter was born August 23, 2007. From the get go he wasn't a typical big brother. He didn't want to hold her(He had turned 3 in May). Didn't want anything to do with her actually. When I would nurse her, he would throw everything he could at us. He started 3 year old preschool a week after she was born. I'll never forget the words from his teacher after picking him up "Boy, he never slows down does he? He just keeps moving all the time!" Boy was she right!
**The one thing I'm forgetting to tell you is that up until this point, he has only slept through the night once in his life..He was about 5 months old at the time..He was still waking up 3-4 times a night**
He did okay in preschool but was getting more and more defiant as time went on. I was doing some research and found something called "Oppositional Defiant Disorder". Fit him to a T. I gave his teacher and my mom some handouts about it and asked what they thought. They both were like "well i see some similarities but i don't think he has this. I think he's just all boy." Oy, would I get tired of hearing that phrase!
In March or April 2008, I don't remember the exact date but I will NEVER forget it. My daughter was in her high chair eating a snack and I got Landen ready to brush his teeth. About 5 seconds after starting, I hear him growl and come darting out of the bathroom throwing things! He picked up a metal Easter basket with a plastic handle and chucked it across the room! It hit his sister square in the head! She immediately started screaming and bleeding everywhere! To the ER we went for her! It was so close to her eye and she was so tiny they didnt put stitches in it but used a glue instead. What happened while he was brushing his teeth that caused him to have an outburst like this? The water from the toothbrush dripped onto his hand and he didn't like it.
In May of 2008 we went for the kids' wellness checkups and I brought this up to the doctor. At this point, he said, I think maybe we should have someone talk to him. Yeah, you think?!?!?!
So to UNMC we went to be evaluated by a social worker. To make this long story shorter, he was diagnosed with ADHD and ODD to start with. Man, my mommy instincts were sooo right!
So we began therapy. They wanted to put him on medication right away but I was against it. So we did therapy instead. I pulled him out of 4 yr old preschool because he was having too many fits and it wasnt right for him. I searched and searched for a place for him to go and low and behold our therapist suggested a place, literally right around the corner from our apartment. Behaven Day Center..specially for children with behavior problems. Boy was that an answered prayer! It took a bit but things got much easier to handle! Things weren't perfect by any means but much easier to handle. He still had many emotional ups and downs but it was easier.
In August of 2009, Landen started kindergarten, something I didn't know would happen before. It was awesome! I did start him on Ritalin for school. It truly helped him focus and do better in school. It helped tame down the hyperness. But the mood swings never went away. The doctor wanted to try to switch his "sleep meds" to something that might help his moods..BAD mistake! He was awake for over 40 HOURS..No, that's not a typo, thats 40 STRAIGHT HOURS of being awake. It was scary! Back on the sleep meds we went.
Landen made it through kindergarten with relatively no problems..A few OCD issues but those were handled quite well by the teacher. People used to give me excuses for his behavior: 1) I'm too easy on him, 2) he's reacting to the changes in his life, 3) He's just putting on a show for you...and blah blah blah sooo many more!
**I'm leaving out most of the daily "battles" because they are the same every day. Just the fighting, the mood flips from one minute to the next. The biting that would make me bleed, the hitting of the sister, the tantrums of little things, the anger if I said the wrong thing to him..this happened on a daily basis**
I brought up bipolar disorder to his doctor during this time..She told me that he had some symptoms but those were probably related to his sleep issues and that I should stop reading so much.
Then in 2010, he started 1st grade and things were going well until about Thanksgiving. Then he started having issues with transitioning and finishing a project. If he didn't have time to have it done, he would throw things on the floor and rip up his project. That has escalated into hitting his teacher and throwing things across his classroom and flipping chairs.
After fighting to get an appt with his doctor to adjust his meds, we got one. NEVER again will I wait like that! They told me that if things got too bad, I could take him to the emergency room! I DON'T THINK SO!!!  The doctor blew all of my concerns off, upped his meds and sent us on our way. They didn't work.
The next week he was in In School Suspension for hitting his teacher. We seen a new therapist at a new clinic on the 2nd of March and here we are now.
I hope this answers some of the history about Landen..If not, let me know and I can answer any other questions for you.

Here is the link for Behaven Day Center that I talked about:  http://behavenkids.com/

Thursday, March 3, 2011

Stuck inbetween an outburst and a school system

I'm frustrated. My son has obvious needs that the school should be paying more attention to. I politely asked for a little more help for him the next few days until this new medication really gets into his system. The answer I recieved from them was "I don' think that we can do that." Why you ask? because of the fact they lack two things: a full understanding of his disorders and manpower. They just don't have the resources and abilities to work with him one on one in that school. I've heard many things from them including "have you tried spanking him?" "Does raising your voice make him listen?" "What kind of discipline do you use at home?" "We've done all we can at the school level, its time for a change at home." Wow, really?? Apparently, according to some, I'm not being a good enough mother and that is why my child NEEDS medication.
Case in point. Today in gym class, Landen was sitting right by the gym teacher doing exercises, laughing and having a good time. In the blink of an eye, his smile disappeared, he became angry, took off his shoes & socks and threw them. The gym teacher said there was no reason for it, it just happened. Welcome to Biopolar Disorder 101!! That happens...A LOT!!! Its been happening with Landen since he was two..
So, tomorrow, I'm taking a sick day(my daughter has a stomach flu and rotavirus at the same time) and I'm keep landen home with me. That way, he doesn't have to stress about school and I don't have to stress about him. I hope we survive the day.

Wednesday, March 2, 2011

It's Official

Well what I have thought and feared for a couple of years now has finally been said. My son has Juvenile Onset Bipolar Disorder. Its like a welcomed sucker punch to the face. Its what I've been thinking all  along but have feared the most. This is very complicated and uncommon. Only 1-2 percent of juveniles(children & adolescence) are believed to suffer from this. Think about all the children in the the US..that is not a very high number. That would be 1 out of 100 children. So in terms of my own child, I'm scared. I'm scared for his future, I'm scared for his right now. I'm scared that he will be kicked out of school before the new medicine has a chance to work.
Today we finally seen a new psych doctor. She talked with my Landen first, then me. She told me that he is definately not the typical 6 year old boy. She didn't tell me all they talked about but did say that he told her "I hate myself, I hate my life. I'm a bad kid. I do bad things. My brain tells me to. I can't stop it." What 6 year old says that?!?!?! How incredibly sad is that!
My heart aches for him. I want to make life so much better for him. He shouldn't feel the kind of pain and suffering he's feeling at 6 years old.
I'm starting this blog as a way to document things and to maybe give some insight and recieve some advice from others about Bipolar disorder in children. I know I'm not alone in this battle.