Up and down and all around

Still can't tell which kid I'm going to interact with from moment to moment. She's definitely less violent and aggressive - yay for Lamictal - so I'm just going to be grateful for that at the moment. She's more into starting trouble for trouble's sake, which I'm thinking might be more "normal" five-year old behavior. Of course, it's on a grander scale because drama is very exciting to her, so we ended up with a painting fiasco that involved her brother, our deck, nearly my whole body, and a lot of ruined paint. No more painting for awhile.

I'm not feeling as weird as I was on Celexa. Still doing just a half dose because I'm still not sleeping well (DS has been up a lot) and it's making me extra tired. Sigh. I guess the drugs are helping me to accept this crappy lot in life and not be as upset about it. I haven't been crying uncontrollably since I started taking it, so I guess that helps. I'm kind of mad about it, though. There is so little support for parents/family of kids with mental disorders that we're having to take medication to make up for that fact. What a sorry world this is.

Cautiously optimistic... again

Since my last post there have been some serious improvements. She's been able to stop herself from going into a full rage, which is really awesome. She snapped at me, "NOOOOO!" this afternoon when I asked if she wanted something to eat and then quickly said, "I mean, no, thank you." Wow!!! I almost cried.

The other development is that I've started an anti-depressant medication. I just can't handle the anxiety and the ups and downs. I'm hoping that she stabilizes and I can go off of it sooner rather than later, but until that time, I think I need something to help me survive. Once she stabilizes, I'll probably suffer from PTSD, so the meds will see me through that.

I'm hopeful!

Could it be something else?

I find myself wondering if there isn't something else wrong with my child. She actually seems to be getting worse the higher the dose of Lamictal we give her. Now I'm scared that it won't work and we will be trying to wean her off Abilify and Lamictal and then try something else while she's trying to start kindergarten. I just wish I could communicate with her and tell her how much I love her and that I am trying my best to help her get stable.

In the meantime, I will be starting Celexa, because I can no longer handle this terrible blow life has given me. There is no respite care, no support, no nothing, so I will be drugging myself in an effort to fool my brain into thinking this isn't really as bad as it is so that I can continue functioning and taking care of my family. Mental Illness sucks.

Work/Life balance? Impossible!!!

In trying to do the right thing for my daughter (working part time to be more available for her), I've hit a roadblock. Long story short, my vice-principal is happy to accommodate me coming in later in the morning, but unless I convince another department member to come back and work full time to take one section in the afternoon, I can't pick my kiddo up from school to save her the stress of dealing with after-school care. UGH! I hate this! My husband and I are both well-educated in employable fields (me, teaching; him, economics and computer technology), but we don't make enough money for one of us to stop working to take care of our daughter. We didn't know when we decided to have kids that we were going to have a special-needs child. In fact, we checked to see if either of our children were going to have any genetic problems before they were born. Trouble is, mental illness doesn't show up on those tests. We got married, made sure our relationship was strong and solid and made sure we were doing okay financially before we made the leap into parenthood. We live in a crappy world where big corporations are allowed to ruin our economy and then get bailed out while the rest of us who try to be responsible are screwed. How can I choose between my child's health and a roof over our heads???

Long time, no write

Has it really been ten days since I last posted something? That doesn't seem possible. We've been on a roller coaster - some good things, some bad - nothing consistent. I think I went back to work too soon. DD has been having a harder time since she started going to preschool full days. I think she misses me, although she clearly likes her school and her teachers clearly like her.

The second day I dropped her off for a full day, the teacher stopped me and told me that she had seen DD's diagnosis and that she wanted to tell me that her daughter also has bipolar disorder. She said that she'd be happy to talk to me anytime. I haven't followed up with her yet, mostly because I'm just barely hanging on, but I intend to get her phone number. It's funny that I was worried about sending her to a school that's far away from our home (it's in the next town), but it turns out that all the time we have driving back and forth isn't so bad. She isn't talking to me as much as she was when we had more time together, which reinforces my thinking that I went back to work too soon, but I also know that once I have her brother settled at his new daycare, I will have more time for her and we can get back into a better routine for her.

We are finding ways of helping her more at home, even though things are still pretty rough with her. We've started taking her out for a walk or a bike ride after dinner. She gets exercise, fresh air, and some undivided attention, although when she comes home to head off to bed she's not always easy to deal with. I wonder if she's overtired? She gets this burst of energy right after dinner and I figure it's better for her to get rid of it outside where she can run around instead of inside where she beats on us and the cat.

The good news? I sent in a request for assessment to the school district and I got two phone calls back - one from the head of special services and one from DD's school psychologist. I got to talk to the psychologist for at least twenty minutes today - she was so great! She totally listened and told me how glad she was that we were letting the school know about the bipolar diagnosis right away and that they would begin the assessment process after school starts in August. Then, I went to meet with her principal, who is FABULOUS! She wants to set up a meeting before school starts with DD's teacher and us so that DD can meet her teacher and so that we can talk to the teacher and let her know what our concerns are. Then, she asks if she can give me a hug to welcome me to the school family! OMG - she is so awesome!

I'm hoping to get some sleep tonight, because I can't remember the last time I slept a whole night. DS has been teething (he's 2 1/2) and super cranky because his lovely home daycare is closing (she's moving because her husband was transferred) and because his sister has been so difficult. If I don't start getting more sleep, I think I'm just going to have to break down and get started on anti-anxiety meds. I am already an anxious person, but now I just can't shut my brain off enough to fall asleep and as soon as I do, DS is crying for me. UGH!

Two steps forward, five backwards

My last post was titled "Cautiously Optimistic" and with good reason. What a hard weekend and what a rough Monday. I got the crap beat out of me this afternoon over who knows what. My poor DH is exhausted from work and comes home to chaos and then he starts yelling and I just want to crawl in a hole. Now I'm worried that my work won't pay for my leave of absence because someone decided I was trying to get away with something and sent an email to the whole world. I hope it can be fixed, otherwise we're up shit creek without a paddle and possibly no boat.

I just don't know how to parent my daughter. What do you do with a kid who is punching and kicking you one moment and then crying and telling you that there is a war in her head the next?

Cautiously optimistic...

Better day today. We made it through two half days at the new preschool - she did really well both days. She told her teacher she really missed her mommy at one point, but seemed to bounce back. When we got in the car, she told me she really wanted to go for a full day next week. Yippee! She seemed very happy. We had one rage today and I just told her I was going to have to stop her because hitting me and throwing things at me was just not okay. I held her in a safe restraint-type hold until she stopped trying to beat the shit out of me. As soon as she'd calm down, I'd let her go and when she came after me again, I held her again, softly kissing her head and telling her I loved her. Eventually she snuggled up on my lap and asked for something to eat and we were done.

Tonight is the first night in I don't know how long that there wasn't a crazy rage before bedtime. Yahoo! We increased the dose of her mood stabilizer yesterday and I'm hoping that's starting to have an effect. Unfortunately, she had nightmares several times last night. You take the good, you take the bad...

Rough night tonight

We started out having a pretty good day today. We visited the preschool we're switching DD to (we pretty much had to leave the previous one because she go too violent with the other kids and staff - so embarrassing) so DD could check it out. I could tell she was nervous, so I made plans to go swimming with her afterwards, but our pool was closed because some horrible people vandalized it! She was very upset, but handled it without going in to a rage. The day continued to go downhill after that. I had to stop by her old preschool to pick up some of her stuff (without her, of course) and I foolishly mentioned that one of the kids asked where she was and that he was sad to not see her but glad she was going to a nice school. I guess he was one of the kids she would attack regularly and she told me that he wanted her out of the school (in a dark, mean voice) because she kept hitting him and that he was glad she wasn't at that school anymore. Then I got the "I don't want to talk about it anymore" screaming tantrum. She completely fell apart this afternoon as soon as we got home and again after dinner. She wouldn't stop attacking me or her little brother. Thank goodness Grandma was here to help. What an awful ordeal! Of course, the baby was up half the night and I was crazy tired all day long - doesn't help my patience :-(

Lamictal, lamictal, I wish you would start working soon!

Behavioral seizures?

So I haven't written in a few days, mostly because things have been so hard that I can't bear to write about them. I've been reading the book The Bipolar Child by Dimitri Papolos and Janice Papolos and that has helped enormously. There is one part where they talk about a mother referring to her child's rages as "behavioral seizures" and I thought it was a good way of thinking about it. I read the section to my husband and I am repeating it to myself frequently throughout the day - she is mentally ill, she has a disease/disorder, this is not her fault, she is not doing this on purpose, it can't be helped right now, we are doing everything we can, don't react emotionally, hang in there, hang in there. It's hard. Especially when she tells me she is going to die because she can't have something or can't do something. And when she's trying to beat me as hard as she can. I know if I let her, she'd probably beat me to a pulp. It's not easy to stay calm and not respond emotionally.

I miss my daughter. I can't find her most of the time. She's in there, somewhere. I catch glimpses of her throughout the day. I wish this medication would start working soon. I'm scared that my family is ruined now and that her poor brother will be so traumatized by her that he will get the hell out of this house as soon as he is able. I love that little boy and I don't want him to be hurt. This just sucks.

I reached out to our county mental health department and as soon as they heard that we had insurance, they tried to blow me off. I almost started to cry and begged them for help, anything, resources, whatever. Finally they suggested I contact NAMI (National Alliance on Mental Illness) Here is a link: http://www.nami.org/
Thankfully they have a chapter in my city. When I called their warm line, I had to leave a voice mail, but the director got back to me fairly quickly. His first response was to question me about how she was diagnosed and then to tell me he had never heard of a child that young being diagnosed. I totally get that he was truly trying to help, but it's another reminder and confirmation of just how alone we are in this struggle. The director of a local chapter of a national organization devoted to helping people with mental illnesses has never heard of such a little kid being diagnosed with bipolar disorder. Of course, it immediately makes me wonder if that is what is going on. Maybe he's right and she's not bipolar and now I'm drugging my kid inappropriately and letting her run our lives. Yay! Another way I have fucked up as a parent!

Truly, though, after reading some of The Bipolar Child and reading lots online and other books, I'm pretty sure this is her. There are a few things that don't match exactly, but the information is clear that what they describe is "most" kids and she won't have every single symptom.

DD's friend from her now former preschool lives down the street from us and stopped by on a walk to say hi. DD was so excited to see her! The mom said something that they hadn't seen DD for awhile and I casually said that we were changing preschools because DD had been having a rough time. The mom smiled, nodded and said "Yes" so I know her kid ran home and told her that DD was hurting other kids and had to go home or something of the sort. I worry that DD hurt this kid, but I guess if it was a serious problem, they wouldn't have stopped by. We're going to her bday party on Saturday, so I have to figure out what to say to the other parents when they ask why DD hasn't been at school or why she's not there anymore. Sigh. I guess I answered my own question and I'll just say that it wasn't working for DD anymore and we opted to place her elsewhere.

Today really was a better day. I kept DD busy, busy, busy. She didn't have much time to have rages because we had lots to do today. Tomorrow will be another round of how can I keep her busy while still maintaining my sanity. At least I have an acupuncture appointment that my MIL is helping me get to by hanging out at the house with DH. Wish me luck!

Hard to accept

Something curious is happening. The friends and family members I've shared DD's diagnosis with all appear to be supportive and sympathetic, but it's clear many of them don't believe it. It's not necessarily a bad thing, but when someone says, "I have cancer" I'm pretty sure most people don't question it. When it's a mental disorder, suddenly everyone is qualified to question the diagnosis and recommend alternatives. I'm trying not to be annoyed or insulted, but I really do have to wonder about how much we as a society accept the idea that our brains can have biological disorders that require medication. I mean, you wouldn't tell someone who had cancer to not have chemo, right? My kid without medication is not someone you want to tangle with. Seriously. Medications are required to keep her from destroying herself and our family.

I'm also scared. Really, really scared. Are parents going to keep their kids away from my kid? What about her brother? Will parents keep their kids away from him, too, because of his sister? Is my kid going to be one of those kids who blows up the school, despite all of my best efforts to get proper care for her? This is so hard - to have a child with a very serious illness that is not an "acceptable" disease, which means little or no support for our family.

AHHHHHHHHHHHHHHHHH!

Horrible day! I didn't plan well and it all went south this afternoon with a painting fiasco. I think I probably got about ten new bruises all over my body. I'm so sad and frustrated. If she wasn't so violent, I think I could deal with it better. Getting hit, kicked, punched, pinched, etc. is so hard to take, especially from someone who isn't quite five years old. I think I'd prefer if she yelled mean things at me. Tomorrow, I will plan better. We're going to stay out of the house and on the go. I think she needs a nap in the afternoon, so maybe I can drive long enough to make it happen. Wish  me luck!

Sometimes things work out...

I just heard from my employer. I can get extra sick leave to stay home to care for DD while we're trying to stabilize her. Whew. I'm one lucky duck today!

Lamictal, lamictal, when will you start working?

I don't know how much longer I can take this. DD woke up this morning in a rage  because she couldn't snuggle with her daddy. Normally I would think that it was sweet that she missed her dad (he was in the shower), but she threw herself on the floor, screaming, and then decided to attack me. Sigh. I know we're just waiting for the lamictal to get up to a therapeutic level, but boy, oh boy, it's taking a lifetime. After she calmed down about not having Daddy to cuddle with, then it was the cat. I put the cat in the garage for its own safety. I think I hit my limit when she started throwing things at me while I was holding DS, who is only 2 1/2.

The good news? (yes, there is good news, if you can believe it). She started crying after her last screamfest about the cat. She came in to her room while I was changing her brother, curled up on the rocking chair, and hid her face. That's how I know she's embarrassed. I rubbed her leg and then she crawled in my lap. I told her I loved her right away (I try to remember to tell her I love her no matter what she says or does every single day). She was better after that and ate her breakfast and took her medicine without complaint. So, yeah. Things are starting to get better, in microscopic ways.

The next challenge today? Trying to figure out how to stay home and take care of her without becoming homeless! Wish me luck!

Diagnosis

When DD's psychiatrist said, "I know what this is. She's bipolar." I felt a weight lift off my shoulders - at last, a diagnosis - and another, heavier one take its place. Bipolar. What the hell does that mean?

So far, it means that my kiddo will be on medication for the rest of her life, she will have ups and downs that may or may not be preventable, and we are going to get to explore all the levels of hell while we are alive.

It also means that my darling might become incredibly successful at whatever it is she might want to be. Right now, I'm holding on to that. If we can just get her through her childhood, which, as I read last night, is the worst possible time period for a bipolar person, then we will have been successful parents. Great. Another level of hell.