Guess the Day Wasn't Over Yet

I should have waited before posting that last note.  Caroline woke up from her nap a little before noon, stumbling around and saying she had to go back to school right then.  I could tell she was still in a brain fog from sleeping but she insisted on returning in time to have lunch.  Well, with an uneasy feeling inside, I took her to school where we found out immediately that lunch was at 11:00.  She was extremely unhappy about having missed lunch because it was her only social time.  I could tell this was not a good way to come back to school, based on how grumpy she was, but she left to go to class.  I went to Wal-Mart around the corner, then got a phone call from her about 10 minutes later begging me to pick her up, that the work was too much, she was behind, she couldn't keep up with the teacher, etc.  I knew the real problem was mostly that she was too tired and groggy to do school.  Remember not to let her rush off to school without fully waking up, I scolded myself.  

Her teacher called me this evening and said she was just concerned that Caroline was overwhelmed by the writing, and needed to know that she could make accommodations for her.  I told her it probably wasn't the writing as much as her stupor and grumpiness that made her freeze up.  Her teacher seemed quite understanding and wanted Caroline to know she didn't want to stress her out too much.  I think that this week is just going to be a big adjustment, and we have to make sure she is in bed by 9:00 sharp.  

I felt discouraged by this day, once again with Caroline home, embarrassed again, and me getting nothing done again.  But I know I need to hang in there and not judge the rest of the time on today's events.  I just wish one week could be fantastic for her, but I guess I have to admit that not a week goes by without some sort of to-do or trauma.  I just get really tired of it, and sad for her.

Second Day Not So Great

Well, this second day at school did not go as we thought it would.  Caroline's lack of sleep the night before and then having to stay up later than she should of to complete homework in six subjects led to her being exhausted this morning.  I woke her up at 6:30 (she has to leave at 7:30), and she was very difficult to rouse.  When she did come down stairs, she fussed and grew increasingly agitated saying she was too tired to go to school.  Of course, I refused to let her stay home (mistake) and she was at school for only a half hour or so when she called my husband to come pick her up.  She was obviously too upset and angry by that time to stay there.  He brought her home and she went straight to bed.

Bill said that now he knows why schools frequently start with half days in the fall. It is a big adjustment for them to have to get up early, do the homework all afternoon/evening, and then go to bed earlier when during the summer they can stay up later and then sleep in until they are rested.  Caroline got a big jolt on Monday, and with the bipolar disorder, everything is compounded, especially if she has lost sleep. 

I am mad at myself for not listening to her when I knew she was truly tired, not just that she didn't want to go to school.  I want to treat her like my others, but she needs an extra measure of grace.  I myself have missed two nights of good sleep and I was non-functional both mornings until I had a nap after the kids went to school.  Not as productive, but better than yelling at my kids all afternoon and evening because I am exhausted.  

Hopefully tomorrow won't be a repeat.  I am concerned about her missing school and having too much make up work on top of the regular homework.  

First Day at New School

I just picked up Caroline from her new school, and it seems as though everything went great.  She liked the kids and her teachers and came out with a smile on her face.  The workload seemed about right: challenging but not too hard.  She woke us up last night at 4:00 am because she couldn't sleep.  I have her one of her sleep meds and she went back to bed but was up before 7:00 She was extremely anxious about getting there on time with all the right stuff.  She was actually very agitated and I hoped that wouldn't carry over into the school day,  but it didn't.  I guess we'll just  continue to pray and hope that she does well there for the rest of this year.  I went back to bed after everyone went off to school and slept for three more hours.  Can't do that middle of the night thing anymore--thank goodness we don't have an infant!  

Please don't do this

Right now we are dealing with a very difficult situation with my in-laws where basically both are incapacitated, one quite recently and without warning,  and their will was not in order so my husband and his sister are scrambling to try to get power of attorney so that the state doesn't take most of their assets and medicare stops paying for nursing home care. This means my husband has had to be away a lot recently trying to care for his dad, the financial problem, etc. while I am trying to hold down the fort with a bipolar child and three others.  Right now, I am really stressed.  Let's all remember TAKE CARE OF THINGS EARLY so our children aren't left holding the bag.  Life is short, and sometimes the end takes us by surprise.

Just in Time for REALLY IMPORTANT EVENTS

What's on time? Her ranting, raging outbursts.  They always arrive just on time for some REALLY important meeting/phone call/trip/task or whatever that you really want to go well.  Maybe she senses my frenetic anxiety over whatever it is and she takes it on as her new modus operandi.  Whatever the reason, the stress level goes from a five to a ten in about 10 seconds, both she and I escalating rapidly.  Maybe it's the continually dull gray skies we have been subjected to for weeks now.  All I know is I can't wait for Monday when she starts school.  I REALLY hope it goes well.  I've got a house to sell.  

Forming Support Group

I have decided to pursue forming a local support group for parents of bp kids.  I think I will call it Tidewater Parents of Bipolar Kids.  There is another local group that is associated with the National Alliance for the Mentally Ill, but I wanted to form one associated with the Child and Adolescent Bipolar Foundation, which has a tighter focus on kids.  I love their website.  At this point, we know enough professionals to bring in monthly as speakers.  I have already advertised the first meeting via CABF which helps connect people with support groups, but also I will advertise in local magazines and through Caroline's therapist, who counsels a number of BP kids.  

Also, I have joined an online support group for moms of bp teens through CABF.  The combined knowledge among all of the participants is amazing.  I used to belong to one of these before but it was several years ago and the postings scared me.  Now, I can read the trials of these other families without flinching because we have been through a lot already.

When Siblings Suffer

My fifteen year old daughter "Elizabeth" begs often to be sent away to boarding school because she hates being here so much and dealing with Caroline.  I really feel for her.  My husband is much harder on her, probably too hard, than with the other girls.  She says she feel like no one ever listens to her or pays attention to her.  She failed her driver's permit test today and now she's really upset.  It is hard when I already feel guilty about all that she has gone through, and the things that haven't been a part of her growing up because of Caroline's illness.  I pray that she will be able to recover from this dysfunctional home that we never wanted to be this way.  I do try to do things just with her, but I feel like I am always competing with her busy social life and homework and Young Life involvement.  

Yay!

We heard from the school in the late afternoon that they want her to start on Monday.  Caroline was thrilled.  That made up for the fact that her brand-new bike she got for her birthday two weeks ago was stolen.  We discovered that yesterday.  Bummer.  But she is so elated about going to school that she is quite distracted.  

Still Waiting

We thought we would hear from the school today whether or not she had been accepted, but they called asking to talk to her psychologist, the same one Caroline has had for six years.  I put a call in to her, and she did call the school and had a good talk with the principal's wife, who I guess has authority there too.  She said that they really only had one question and that was if  she was  aggressive toward other kids/teachers, which actually she hasn't been.  She just kind of melts down all by herself.  If she is aggressive, it is toward her sisters, and less often towards us. Anyway, we'll find out tomorrow, hopefully.  

Forgot to Add...

Oh, yes, and after Caroline was rescued from the woods, I piled everyone into the car only to discover my battery had died.  Figures.  Thankfully my sister knows how to jump start a car.

Never a Dull Moment

Our lives are very exciting with Caroline in it.  We never know what a day will bring.  Like yesterday when she took my sister's dog for a walk in her neighborhood, decided to try a path into the woods (bad idea), then got so lost she cried out for help until someone heard this faint voice and went to go find out who was in trouble.  She was covered in mud.  I had no idea she had even gone past the end of the street.  

Then today, while in a very agitated state because of who-knows-what, she went out front and decided to take it out on my bushes.  I went out there and told her to stop whacking at the bushes, she told me to shut up (one of her newest and fondest things to say to me), and I was ugly back (not a great Mommy moment), and went back inside.  The next thing I heard was her outside, crying in a very scared manner.  She runs inside holding her head, which was gushing blood down her face.  Apparently she turned from the bushes to the dog leash and was swinging it around in anger, until she hit herself in the forehead with the metal end of the leash.  Natural consequences I would say.  I took one look at it, noted the gaping hole, and said yep you need stitches.  So off to the ER for the long wait.  Luckily my husband relieved me after an hour or so.  She came home with three stitches and instructions not to play lacrosse for the week.  Great.  Just when we got off to a good start.  Oh well.  

One day in the life of Caroline Denisovitch.  (In college, I actually didn't get it until after I had finished the whole book that all of that happened in one day to that guy.  I mean that was a lot of stuff to happen in 24 hours.  Now I understand how that can be, sadly.)

So We Aren't a Year Behind

Today we took Caroline to the private school for her interview and testing.  I was very nervous abut her placement test because of the spotty homeschooling she has had this year.  Well, I guess her natural ability trumped output this year because she placed into seventh grade math, eighth grade reading, and was solidly a sixth grade speller.  Amazing!  She was so proud, and so encouraged that she hasn't lost as much as we feared.  Now they will deliberate and let us know tomorrow if they think it would be a good fit or not.  We think they will say yes, but can't be sure.  The interview went well, we thought, although Caroline got frustrated with how much we talked instead of her and was showing it.  We were very honest about her bipolar condition and the different schools we have tried that were not a good fit. Hopefully she'll be accepted. Even if she isn't, this was a big boost for Bill and I and Caroline as far as her education goes.  At least she will probably place into seventh grade next year at whatever school she goes to.  Thank God!

Navel Gazing Not Intended

I realize that in our society we now have a new and annoying penchant to feel the need to say something about ourselves, whether by twitter, Facebook, Myspace, or blogging on a daily, even minute to minute basis.  I shudder at the thought of joining that throng really, because we are self-centered enough.  Please know that I write on a daily basis out of necessity not out of narcissism.  If I don't write, I implode.  And I want the world to know that early-onset bipolar disorder deserves every bit of research and attention as autism, cystic-fibrosis, Type I diabetes, leukemia and every other childhood disease out there.  So please keep reading knowing that I am always aware of my inborn tendency toward navel-gazing and that I know that I am continually called to serve others, not just my own family, whether by supporting Compassion International, or by caring for the needy around me.  Not because I am some Mother Theresa, but because we are only truly alive when we are serving.  "The glory of God is man fully alive" (Sara Groves, Add to the Beauty)

The Daily Dive

Today I had to drive Caroline around in the car for an hour while she slept--just like when you have a baby that melts down but then won't take a nap. Car travel is calming to her for some reason, so we use it not infrequently. She was fine after that, until about 5:00 when she takes her daily dive. The late afternoon and evening are always her worst times. Remember the hell hour before dinner when you had toddlers and preschooolers? Well, we have one who seems to not have outgrown it. Very inconvenient when you have dinner to make, three other kids who need your attention, and a husband who has come home from work and instead of spending time with you, he has to spend the early evening doing damage control so we can all have some peace later. Maybe.  Sometimes I think it is her craving for sensory stimulation that hasn't been satisfied, sometimes I think it is teenage histrionics, sometimes I think it's the devil. I'm exaggerating but that's just how it feels.

A Sigh of Relief, sort of

Good news!  Caroline actually played in the lacrosse game today!  And did great--scoring a goal and played extremely well.  She woke up this morning and seemed better, and was quite excited the whole day about the 4:30 game.  We are so relieved because she had not had one successful practice where she actually stayed and completed it.  Maybe this will turn the corner for her.  She is definitely a little too "up" still, acting manic but not belligerent like last night.  She is just laughing uncontrollably, and talking w-a-a-a-a-y too much.  I took out the flax oil and also decided she doesn't need anymore of the anti-depressant.  Hopefully she will calm down over the next few days.  

Mania Confirmed

Unfortunately, Caroline is showing signs of being very manic, which looks like extreme belligerence, physical aggression, taunting, laughing in a sinister sort of way, stealing money from her sisters, grandiose self-centered thinking, and this weird devil-may-care attitude about anything.  "I am just showing you my dark side," she boasted, as if quite proud of her rebellious mood.  We are not sure what exactly may be going on with her chemically, except that I did just introduce high potency flax seed oil pills to help with her cholesterol.  She had a bad reaction to fish oil, also inducing mania, so maybe she just can't take high doses of Omega 3 and 6.  We were almost ready to take her to the hospital because she was so out of control.  I could feel Bill's despair.  Watching her in this state just tears at your heart.  She can't see that how she is acting is abnormal.  With Bill's dad still in the hospital, coming several times close to death, I can tell he is very weary and has just about had it dealing with Caroline.  

How Did You Know She Was Bipolar So Young?

There are probably a number of readers who are wondering how and when we knew Caroline was bipolar. Well, it was a process of noting her unusual thoughts, behaviors and obsessions, culminating in a full-blown manic state at the age of seven--very scary.

When Caroline was born, she came home to happy parents, and a sweet older sister, aged 2. Jane and Mae followed within the next four nears, so at one point I had a six year old, a four year old, a two year old, and a baby. We were truly a happy if busy family. We have always had a loving strong marriage, and there was absolutely no reason to think that any of our children would have a major psychiatric disorder.

We did notice that when Caroline turned about fifteen months, she began to show quite a temper. Up until then, she was just the perfect baby. She was not overly fussy, or resistant to sleep at all. She slept through the night at eight weeks and took two hours naps three times a day. She smiled all of the time and showed no signs of being overly tempermental.

One day, at fifteen months she got mad at me and tried to bite me. That was something new that my older one had never done. But it was not unusual for a toddler. However, her temper was becoming more and more obvious. We laughed about it and called her strong-willed, just thinking we would have to discipline her more later.

But at three, she became obsessed with the story of David and Goliath. We could not read that story to her enough. Then she would try to act it out. Very cute we thought. At Christmas she wanted adventurous toys, like a fireman costume, or a spaceship. Our oldest only ever wanted dolls, kitchen toys, frilly dress ups. But we just thought, well she is just different and that's great.

Then the tantrums became very out of control. She would get so angry when she was told no it was as if she was having a seizure. And they would last a long time. She would even try to throw things at me like blocks and try to bite me. We tried every form of discipline, read books, took classes, and in spite of all of our efforts, her temper would not be controlled. In preschool, she was a bright, spiritual child, but would get in trouble for stubbornness, and once she bit another child when she was four out of anger. Her teachers always liked her a lot , thought she was extremely smart, but called her very strong-willed.

By the time she was five, I felt like life was getting really out of control. She would descend into these downward spirals, expressing dissatisfaction with herself and with life. She seemed depressed at times and had dark thoughts. So we took her to a psychologist, who did a battery of tests. The results came back that she was depressed enough to start medication. This both reassured and disheartened us because we had a confirmation of what we had suspected, but why would this child, certainly not abused or neglected, in a very loving home, be depressed? It didn't make sense.

I got the prescription filled for the anti-depressant, but something made me hesitant to give it to her. The medicine was Paxil, which later was taken off the list for use in children because of inducing suicidal thoughts. I think God was telling me that this wouldn't be good for her. I am grateful I never gave it to her.

She seemed to improve in kindergarten, and so I put off pursuing more psychological testing or counseling. But then, on the first day of first grade, she began to get in trouble on the playground. She was rougher than most of the boys, and any game she viewed as war. The same was true in PE. She was David and everyone else was Goliath. She was on top of the class academically, but wasn't getting high marks in behavior outside of the classroom.

In addition, my oldest child was becoming afraid of her. Caroline would get physically violent towards her and her younger sisters, scratching them and throwing punches or kicking. When mad, she would kick her walls and door and even try to kick or hit us. We were feeling a lot of despair and worry over her. One day Elizabeth told me she couldn't take her anymore and said "I shouldn't have to be afraid of my own sister." Those words hit me hard, and I decided something had to be done so I took her back to a psychologist, a different one, for more testing. This time she was referred to a different psychiatrist, and she also began counseling on a weekly basis. She was diagnosed as both ADHD and depressed. This time I was willing to put her on a medication because the situation at home had become unbearably stressful and chaotic for everyone.

The psychiatrist put her on Zoloft in November of 2003 and at first she really seemed to improve. Her dark moods disappeared. But then she began to do really odd things. She began to exhibit the "superman complex" where she showed no fear about anything. She would jump off of the very top of our jungle gym just for fun. A few times she climbed out of her second-story bedroom window and jumped down to the ground, again for fun. Then she began to make these weird concoctions in the kitchen from all sorts of different things. She called them potions. I found tools from Bill's toolbox in her closet, with evidence she had been trying to dig up the wood floor. She told me she was making an escape tunnel. By this time we were very uneasy about her state of mind. Zoloft had been implicated in the news about the same time for being a strong trigger for suicidal thoughts and behavior in children and teens, but she didn't seem depressed, just really full of herself. One day she actually broke into an empty house on our street and pretended that was her new hideaway. The policeman we called to explain this too couldn't believe that a seven year old had done that.

The climax was when she got on her little bike and rode far away, across a bridge, through a heavily traveled area, and into an entirely different neighborhood, several miles away, one we had only ever gone to by car. We were incredulous when she rode up breathlessly and told us of her great feat. But then she began to describe in detail a particular area that I know I had never taken her to, but I was familiar with, and we realized to our complete horror that she probably had executed this dangerous trip .

We took away the bike and locked it in the shed. She got very angry, punched my husband in the stomach hard, grabbed an axe from the garage and began to swing at the doors, puncturing the plastic with ugly gashes. As we watched her rage and chop from the kitchen window, we got her psychologist and psychiatrist on the phone, and my doctor sister. They all said take her immediately to the psych hospital. While we were talking, she turned toward us and held the axe up to her neck, threatening to kill herself. Fear gripped my heart as I watched my precious and beautiful little girl seemingly possessed by an inner monster trying to kill her. I ran out to her, and she dropped the axe and was crying and saying how scared she was. We bundled her into the car and drove to the hospital. There she was admitted for a week. They told us she was probably bipolar and was reacting negatively to the anti-depressant, as a bipolar child would. We didn't want to believe it, resisting the diagnosis initially. But they put her on a mood-stabilizer, Trileptal, and took her off of the Zoloft. She began to improve, and so we concluded she likely was bipolar.

Bill's dad is bipolar and depression does run in my family, but I never thought that meant I could have a child who was genetically predisposed to have a childhood mood disorder. An incurable, lifetime one. One with stigma and heartache attached to it. We grieved. It took weeks for the Trileptal to really have its full effect, and then she was better. Still bipolar, but better. At that time, we had no idea how much our daughter would suffer over the next six years. She has been hospitalized every year since then, sometimes twice a year, because of big mood swings or, even worse, hearing or seeing things. Usually one of her meds has petered out, or she needs something added. This has been much much harder than we imagined.

A bipolar child is different from a bipolar adult in many ways, and I will explain that in some other post. If a child is diagnosed young, it usually means they will have a more severe form of the disorder as an adult. That news was not what we wanted to hear. But this is what God has given us. So we have to just keep going, keep loving her and accept the fact that we will be caregivers for quite a while.

Brain Fog Did it Again

I feel like the stress of raising a bipolar child has given me this brain fog that causes me to forget a lot of things: what I just walked into the room for, what I was just about to write down on the white board, and important appointments.  Like the interview for Caroline at the private school!!!  I thought I had written it down correctly, but apparently it was on Tuesday.  Bill wants me to get a blackberry ASAP.  He's probably right.  We rescheduled for Monday.  At least we got the application turned in with all of her test scores, past report cards, etc.  When they see that she is bipolar they might just say no anyway.  At least today the sun is shining and the trees are all blooming.  Spring at last!

Her meeting with her psychologist today to process her meltdown last night went really well.  She was able to articulate exactly what her frustrations were, and we talked about trying to increase her distress tolerance, which is in the negative right now.  

This weekend my oldest gets her drivers permit!  Everything happens so fast now, and I can't keep up with everyone's needs/wants/appointments/rites of passage.  Life feels like a blur.

Wrote Too Soon

I don't even want to write this because I was so angry and discouraged by Caroline's actions yesterday after she got to lacrosse practice.  First, let me say that I was concerned she was a little manic yesterday when she got suddenly hyper-focused on getting a hamster.  Her last hamster died because when she was in an extended manic phase she forgot all about it and let it die of starvation.  Well, she seemed a little too intent on this new mission, but it's always hard to tell if a new mission is just being bipolar or if it is the first sign of a period of mania.  

So she goes to lacrosse with my husband, seeming to be fine and up after we cajoled her enough.  When she got there, my husband noticed that she seemed very confused by the coaches' instructions and kept doing the wrong things.  There is a whole crush of girls there, not just her team, because I guess they are training several teams at once, then dividing up into teams on game days.  This isn't the best situation for Caroline, because she is very ADHD too and gets extremely distracted in noisy, crowded scenes (she can't take stimulants because she goes immediately manic).  

Well, she kept messing up, then got winded after a run, which completely undid her because she has never been out of shape before.  She is used to running fast with everyone trailing behind, but this time the extra weight she is carrying (15 pounds since Jan. 3rd) and having not run all winter caused her to collapse after the run.  She thought she was having an asthma attack, but my husband said he could tell she was just winded.  Then she insisted he take her home, but he insisted she stay and at least watch the team if she couldn't run (her ankle was also an issue since she had twisted it the day before).  She threw a fit, and went to the car where a bigger scene ensued.  She called me crying and shouting hysterically.  I was so shocked to hear she was doing this, and then so angry I told her that daddy was the one to make the decision and I hung up.  

She then proceeded to hit my husband's nice car with her lacrosse stick, putting several big dents in the hood.  I am really bummed about this since Bill has never had a car so nice before.   It is only a Honda Accord, but he has always driven the crappy car.  We need to come up with a good consequence for this.

He finally was able to calm her down enough to go home.  Now I don't know if she is going to want to go back because of the embarrassing tantrum she threw in front of everybody.  She is truly her own worst enemy.  Her first game is on Saturday.  I hate bipolar disorder.  

Today we have her weekly counseling appointment and I hope we can process this whole event.  She wants friends but pushes them away through these sort of incidences all of the time.  The psychiatrist wants us to up her mood stabilizer Lamictal and go down on the anti-depressant because of the spring mania thing.  We are doing that, and hopefully she will be less explosive and mission obsessed.  She has an interview and testing today at the private school we want to try her in, but I am really afraid she won't be place into the sixth grade, but held back again due to all of the school she has missed.  She is afraid of this too, but we just have to move ahead.  It would be really hard to have her in the same grade as Jane, because the comparisons would be at times so discouraging.  Jane does most everything right in school, academically and behaviourly.  We could not have them in the same school at all. 

We'll see how today goes.  

No, We Won't Let You Quit

Caroline was adamant today that she could not be on the lacrosse team she had committed too because she wanted her afternoons free, she might be going to a new school soon, she didn't want sports to be her whole life, blah, blah, blah.  I've had enough of her starting something (youth group, horsebackriding, guitar) and then quitting before she even really got started.  Her social fears are behind all of this--fear that she will be made fun of, that someone will start to be her friend and then drop her, fear that she will say or do something inappropriate and then be a pariah--all of which has happened before.  We really got in her face this time  (I am really tired of outlaying hundreds of dollars for nothing).  We reminded her of her favorite movie, Facing the Giants, and how she has to keep going and face her fears too.  That seemed to strike a chord.  By the time I got home, she was dressed and ready to go, with a different attitude.  I wish this worked everytime.  She needs to be on a team because she really gets so much out of the common goal.

Agonizing Over Schools

We thought a few months ago that we had it all settled:  we would move to a different school district and Caroline would go to the public midde school.  Now, while still planning to move to the better school district, we are more hesitant about trying her in the public school right away.  Homeschooling, as much as we would like it to work, won't be an option because she just begs to be in a school.  

Even though we tried two private schools, there is another that we are looking at now.  It is a very small, secular private school.  The 5th and 6th grades are combined and have a total of 10 kids.  The rest of the school is like that.  They advertise themselves as being a school for both the academically gifted and the academically challenged, as well as the average kid.  Their application includes request for previous IEP information, so they obviously are familiar with the special needs kid.  Whether they could handle a bipolar child, we don't know.   We went to see the school and met the principal and some teachers, but the big interview and entrance testing is next week.  Caroline always does better in small classrooms having a  very controlled environment, which is why we may give this a go (if she gets in).  Our big fears about putting her in the public middle school ED class, although small, is that we are guessing she would not like being in a classroom with other "emotionally disturbed"  kids because she is quickly upset and distracted by excess noise, outbursts, etc.  Her behavior in class at the public school last year was great, so we know she can handle a mainstream classroom, but we don't know if the shock of going from homeschooling to hundreds of kids would be too much, with all of her social fears.  

This is so hard, having to guess what might work.  We know we have to be in the right district in case this private school thing doesn't pan out, but I hate to see her asked to leave another private school because of an indiscretion on her part.  Public schools can't kick you out for being bipolar--they can only expell you if you bring a weapon to school, or sell/do drugs, which we hope would never be the case with her.  She doesn't lash out at other kids physically--she just gets mad and yells, maybe stomps out of the classroom, but seldom.  

I hate that ED label, and we have tried to avoid it.  Why can't they call it "emotionally challenged."  ED sounds so harsh.  Who wants to be labeled ED, when as an adult they would simply be called manic-depressive, or having a mental illness, something less condemning.  Life is just not fair to these kids.  But who said life was supposed to be fair, I know, but I still want it to be.

Seasonal Affective Disorder Too

One thing we have really noticed with Caroline is that the fall and winter are always difficult because of the decrease in daily sunlight, but also she is greatly affected by even a cloudy day.  It has been cloudy and rainy now for four days.  I hope we never live in the Northwest, as beautiful as that part of the country is.  In fact, I've been looking online for the cities with the most sunny days per year, and surprisingly they are Denver, Colorado Springs, as well as the expected Phoenix, and a bunch of cities in California.  Maybe we should move because Caroline has enough reasons to struggle with depression besides the weather.  One more thing to think about.  

An Unexpected Blessing

I arrived home last night to find that almost all of the laundry had been washed and folded because a dear friend came over while I was gone to surprise me by tackling this hated chore.  I was so touched by her servants heart.  She had my girls helping her, and when I walked in, she had already left, but Jane, age 11, was still folding and ironing.  So a huge thank you to my friend (who knows who she is!)  I then went upstairs and crashed on my bed, and slept for twelve hours.

My husband is gone again this weekend with Caroline to see his sick father.  So for now all is quiet.    

I hate laundry

That's all. I just hate laundry.

Drivin' and Cryin'

That was the name of a band when I was in college.  That and 10,000 Maniacs.  Those names decribe what I feel about yesterday.  I so wish that I could be writing everyday, or at least everyday, about how much is going right for Caroline and all of us.  Some of you probably find this blog depressing.  I didn't plan it to be, but I do have a hard time seeing the silver linings right now.  This is just where we are at and so I write.

I actually did drive and cry for hours yesterday, at first stuffing the raw emotions down, almost rebelliously, not wanting to start talking to God because I was just too angry.  I wanted to be angry.  Finally, after the first hour or so, I said something to the effect of "I am so disagreeing with your plan right now."  After getting out to the countryside, I finally lost it, just sobbing angry hot tears, feeling that my heart was going to stop because of the intense pain within.  I told Him that my daughter suffers too much, this is the most unfair disease in the world, and that I felt desolate.  So tired of trying so many things to no effect.  Please stop this suffering and pain!

Several friends and a new one wrote words of encouragement to me yesterday, and I was touched and it made me realize that God is here wanting to comfort me even when I am in such a dark place.  I am going on a women's retreat this weekend, part of me doesn't want to go because I don't know if I really want to be around so many people.  But maybe that is just sinful wallowing in my pain, wanting to brood.  I am driving up with someone who makes me smile so that is a plus.  I think I look around at the large group every Sunday in the fellowship room and I feel so alone because even though I have so many good friends there, I carry this grief with me all of the time that will not go away.  One of our dear friends lost a newborn baby last year to a terrible genetic disorder, and I know that they will never forget, and never stop being sad about the child they loved so much.   I feel that I have been watching my previously happy daughter fade away for years and now is replaced by this tormented, suffering one, who will never be cured.  I lose her everyday.  I feel death every day.  I want to feel hope for the future, but I struggle to see it a lot now.    

Yet more hoops to go through

We are a Navy family, and there is a program for military families called EFMP, which spells Exceptional Family Member Program. Enrolling in this would allow Bill to only be assigned to places that have the necessary treatment facilities for Caroline, and not overseas.  If you can get your child qualified for that(more paperwork for school system, doctors, us) then we may be able to get qualified for ECHO which is Exceptional Child  something or other, through which we may be able to obtain free services or extra services for a small fee for Caroline, such as an in-home helper, occupational, speech therapy, etc.  Just one more thing to fill out and wait on.  Oh, and our insurance company wants to us to get her qualified for Medicaid so that she would again receive more service, that they wouldn't have to pay for.  More paperwork.

Right now the biggest question for us is should we be looking at a long-term residential treatment center, where she would stay for up to a year.  That isn't our desire, but we are seeing more and more that Caroline is just so far behind academically, emotionally, socially and that what we have for her here may not be enough.  She is at a critical junction and we want to give her the best we can so that she can function in life. 

Thanks friend

Yeah, sometimes we moms just need some good alone/girl time.  My oldest was upset that I was gone all afternoon and evening--she felt like I had abandoned everyone.  She doesn't get it sometimes.  I probably do need to just spend some time with her now.  Her love tank is low.

Not My Favorite Day (week?)

What can I say.  Another crazy day.  More doctor appointments, some planned, some not.  I just really kind of had it today.  Honestly, I'm just sick of being a caregiver 24/7.  I wanted to just get in the car and drive away and just get away, from everything and everyone.  Having Caroline in our family is like having someone walking around every day with a gaping, oozing wound, ugly and putrescent, something you shrink from lookng at,  but you have to look at it everyday knowing you are powerless to cure this constantly bleeding gash.  I lost it at her today when she declared she was not going to lacrosse practice.  We have spent so much money on her, and often she will quit before she has really started out of fear of failure.  I felt awful later for blasting her, because I know she woud be completely different if it wasn't for this uncaring disorder.  I really was overcome by anger this afternoon and just kind of drove around until I ended up at a friend's house for a glass of wine and girl-time.  She was so great, just letting me vent.  She doesn't completely understand, but she is there for me, and I am so grateful.

Doctors, Doctors!

Within the course of one week Caroline has seen an allergist, her psychiatrist, her pediatrician, an ER doc, and her psychologist.  I've also taken my other ones to the dermotologist, dentist, and orthodontist.  No wonder I get nothing done.  I'm am always taking someone somewhere, several times a week.  I think I need to hire a laundress too.  

March Madness

They call it March Madness, referring to the time when bipolar people tend to go manic in the spring because of the change in light, etc.  Well,  Caroline has been flying high today, too high, and so we are back to the doctor for another med tweak.  In the grocery store, she was filling up our basket with way more of each item than I wanted to buy, and then was trying out the lotions in the beauty department--totally out of control.  Great.  Hopefully this will be a short phase.

The Child Study/IEP process

Today we began the process of going through our local public school system to get a Child Study for Caroline in order to obtain an IEP (Individual Educational Plan) and possible city/state services for Caroline at home.  During her last hospitalization we were strongly urged to seek help from the Community Services Board so that so much of the burden isn't on us everyday.  We might be able to get someone to come to our home several days a week to help tutor her, mediate, provide respite care, or even get free occupational therapy, or free tuition to a special needs school if the state cannot provide what she needs.  

 Students who are enrolled in public school and have either learning difficulties or emotional/behavioral issues are referred to a team in the school including a psychologist, social worker, special ed. teachers, etc, who determine if the child needs an IEP.  Then a home study is done where the child is interviewed and given a battery of tests.  If it is found that the child would benefit from an IEP, then she would be referred to another team to determine the exact services needed.  The team today told us they could not write an IEP because she is not enrolled in public school, but the Community Service Board says they are supposed to do this. We are not sure what to do next, but I guess we will do some digging and find out.  The team today were very impressed with Caroline's achievement testing, but we did emphasize that her daily performance is a struggle, and that this year's academics have been particularly inconsistent.

Right now we are also dealing with my father-in-law being deathly ill with pneumonia, so we are dealing with a lot this week.  I have hired a maid service and I wish I had done this years ago.  When your family is in constant crisis, it is very hard to keep up with the daily grind, even with the girls doing chores.  The house is so much cleaner now and everyone is happier.  Now if I could just conquer the laundry.

Another Thought

I just wanted to share that one of the reasons we try to do these kind of things with our girls, especially Caroline, is that we would build memories and form tighter bonds with them.  I feel like the mommy/daughter trips that I have taken with all but the youngest have made them more trusting of our relationship in general.  But another, kind of morbid thought I have, is that we might not have Caroline for as long as we want to.  The suicide rate of bipolar persons is 15%.  Because she has been diagnosed as pretty severely bipolar, I often think that because I don't know the future, I want to bless her now in every way, not to spoil her, but so that I (we) will not have any regrets later that we didn't do the things we wanted to with her, and with all of our kids.  That's why we are going to Disneyland and Seaworld this spring break.  To build memories, hopefully the good kind, so our kids will remember that life wasn't all chaos and stress.  I am a little nervous about the trip, because of the potential for crisis everyday with Caroline, but we just need to give it our best effort and refuse to let bipolar disorder dictate what we can do together as a family. 

Postscript to 13

Well, the day didn't end so well.  Caroline is obviously out of sorts about being back home with her sisters.  She had no patience with anyone after dinner and exploded at everyone.  She eventually felt bad and apologized which was good.  It always seems like nothing good can happen in her life without an outburst to ruin it, again and again.  Her outbursts are ugly, full of mean words and she will slam doors, throw things, hit walls.  I know she hates what she does.  We forgive her.

Our Mommy/Daughter Getaway

Caroline and I had a great time this weekend, staying at a local five-star hotel with amazing service.  I was sick with bronchitis and a sinus infection, but I managed to keep going even though I just wanted to curl up in that very comfy bed and watch TV.  First, we went out to dinner at a restaurant she chose.  Great food, but swimming in butter.  We returned to the hotel and watched a movie together.  

The next day, her actual 13th birthday, we ordered breakfast in the room, my favorite indulgence if I am on a special trip.  Then we went in search of shopping and a nail salon.  We found both successfully.  She picked out some cute spring clothes and I found a few things too.  Getting our nails done proved quite fun; we had pedicures and manicures, Caroline's first!  She gleamed with happiness over her pretty hands and feet.  She doesn't really pay attention to her nails or feet at all, and it was showing.  Then lunch, a nap, and off to the beach.  The water was too cold to go into of course and the wind made the air chillier than the 70 degree weather.  We walked the boardwalk, taking in the beauty of the wide beach and the sunshine.  Spring at last!  However, we ran late for our special dinner because we didn't realize how far we had walked.  Unbeknownst to Caroline, my husband was to meet us at a very nice restaurant at the north end of the beach.  As we were driving back to the hotel, I realized we didn't have time to go there and change and come back to the oceanfront, so I spontaneously changed the plan, got off the highway, and found a dress shop.  

She needed a dress and shoes, so we ran into a store, quickly had her try some things on, grabbed some shoes, and she wore everything out of the store.  Once in the car I handed her some lip gloss.  She was so cute saying she had never really felt pretty before, and she liked her twirly dress.  Black and white polka dots. Very becoming.  We drove to the restaurant, and when we walked in she saw her daddy and was completely elated.  He came with flowers and a card.  We enjoyed a very nice dinner overlooking the beach.  She looked so beautiful, prettier than I had ever seen her.  Her hair was a mass of curls and she has lost some weight these last few weeks while she has been getting ready for spring sports.  I was so happy to have done all that we did for her that day. She deserved it.

We went back to the hotel and watched Pirates of the Carribbean--the first one, which I hadn't seen.  I was overcome by being sick and fell asleep during the movie.  The next morning Caroline slept til 11:30! (10:30 really with the daylight savings time).  I enjoyed soaking in the bath tub while she slept--something I never have a chance to do at home.  When she got up we packed quickly and headed to a breakfast brunch.  Then we just kind of putzed around until she wanted to go home and ride her brand new bike.  

All in all, with the exception of a couple of irritable moods, we had a great time.  She was chipper and happy to have time away from her sisters.  Her attitude about God and life were considerably improved.  I wish she could always be like this, but a vacation isn't real life, and she has to come home to relationships and noise and school work.  Tonight we are watching the Lewis and Clark documentary by PBS and she is happy to learn that Merriweather was likely bipolar, as historians think from his writings.  Yes, I want her to see that bipolar people can achieve great things.  She will too someday.  Tonight, I am at peace.

The Big 13!

Tomorrow is Caroline's 13th birthday.  I am taking her away for the weekend for some mommy/daughter bonding time.  Hopefully the fact that I am sick won't damper things too much.  I am going to pamper her and we are staying at a very nice hotel, five star I think.  Love Travelocity.  I will give the report when we get back. 

I left out what's positive

I realized that I have been mostly negative regarding Caroline and all of her struggles and ours, and that I hadn't really shared anything positive about her.  She has many delightful traits and can be quite charming.  I've had total strangers come up to me and tell me how impressed they are by her maturity and depth of insight.  At the age of five she was in the very superior range of IQ, but her learning disabilities (poor working memory and short-term recall) have hampered her academic achievement.  In school settings, she often received the end of year award for most creative.  When the first graders were asked to bring in a decorated box for their Valentines, Caroline didn't just slap construction paper on a shoe box.  She got a small shipping box, made four turrets, and turned the whole thing into a big pink castle.  No help from us either.  

All of her art teachers  have enjoyed  her natural drawing ability, frequently picking out her works to display.  Most of her teachers loved having her in their class (not her PE teacher in the 4th grade--she was too intense) because of her out-of-the-box ideas and adult-like conversational gifts.  She was given high marks for her respectful behavior in the classroom.  (The playground and lunchroom were another thing--too unstructured)  She loves science and history, soaking up information like a sponge.  I often find her reading one of our many history books all on her own.   Caroline has always been gifted musically, writing her own songs from about the age of seven.  Her music teachers remarked about her beautiful voice and she has sung solos.  

Her compassion for the less fortunate and for animals has always been evident.  Her favorite shows are all on animal planet. She volunteered with the SPCA when she was ten, wanting to help all of those dogs.  I had to do it with her because of her age--that was fun mother/daughter experience.  A rabbit bit me and drew blood.  I wasn't as excited about volunteering--too many pitbulls.  

Caroline doesn't care about make-up or the latest clothes.  We tell her all the time how naturally beautiful she is.  Even in this awkward stage, before braces and that final growth spurt, we want her to believe she is feminine and attractive for a lot of reasons.

 From the time she was little she loved to dance and move.  For a while,  gymnastics was her big sport, but she has played almost every sport.  She talks often about wanting to get a lacrosse scholarship to college.  Without prompting, she will just put on her running shoes and go for a run.  Not many twelve year olds have that kind of determination to stay fit.  She can outrace me, and I thought I was fast!   And this despite the fact she has exercised-induced asthma.

She has more insight about her inner workings than girls her age in general.  Even today, I couldn't believe how perceptive she is about the reasons for her present depression, and her desire to be in a school instead of being homeschooled, and about her relationships with her sisters.  I just sat there listening and thinking that she understands much more than I give her credit for.  Sometimes I am quickly dismissive of her protestations and don't seek to simply understand and help her find solutions.

She is affectionate and adores her Daddy.  She wants her sisters to like her and is very pained by the fact she has pushed them away with her outbursts.  Although she fights continually with Elizabeth, her older sister, she does express love for her and a desire to have a future relationship with her.  She is deeply hurt by Elizabeth's daily shunning of her.  We are too.

I could go on.  She has her daily ugly moments, but we see a bright future for her if she can conquer the demons of worthlessness and despair.  Today she said she doesn't know that God really exists at all because of how much she has suffered.  What do you say?  I told her that God does exist and deeply cares for her, but she doesn't feel it or see it she says.  But what about the parents He has given you, who will never reject you or turn away?  Are we not an embodiment of God's tender concern for you?  Still she is angry.  I don't blame her.  I struggle with anger also about all of the suffering in her life.  I don't want to give her pat answers, but I won't quit speaking the truth in love.

Medications: the necessary evil

I am so glad we live in this century, even this decade, because of all the advances of modern medicine.  "Caroline" would probably be in jail or dead by now without her bipolar meds.  And our insurance is really great, thankfully, because otherwise her meds would cost us thousands each month.  Right now she is on TEN medications.  We certainly did not start out this way. 

 When she was first diagnosed at age 7, she was put on Trileptal, an anti-convulsant that doubles as a mood stabilizer.  Then that stopped working after two years and she was put on Depakote, which made her gain five pounds a month.  It really didn't work either, so she was switched to Lithium, which she still takes.  She needed something else when it became obvious the Lithium wasn't enough, so she was put on Topamax, another mood stabilizer.  That petered out after a year, and  then she needed an anti-psychotic for visual hallucinations, so they started her on Abilify.  That worked for two years, and then stopped working, so during her last hospital stay, they switched her to first Geodon, which didn't work, then Seroquel, which is mostly working, but then she needed a diabetic medication called Metaformin to prevent diabetes because Seroquel can mess with your blood sugar.  And Seroquel gives patients severe munchies, so she has put on 10 pounds since early January. In addition, she takes sleep meds because without them she can't stay asleep (Trazadone and Clonazapem) and she takes Benadryl to counteract a nasty side effect of Seroquel called tardive dyskenesia, involuntary and sometimes permanent facial movements, which she had begun to show.  We also have her on birth control pills to regulate her hormones because the ups and downs of her cycle were making her moods worse.  In the fall her psychiatrist added Lamictal, another mood stabilizer with antidepressive properties because she always tends to be on the low side.  Prestiq, an anti-depressant, was also introduced recently because she was so depressed.  So, yup, that makes nine medications every day, totaling about 15 pills to swallow in one day.  Oh, I left out claritin for allergies.  

She HATES taking this many pills, and so do we.  The doctors tried to reduce the number of pills she was taking every day during the last hospital stay, but as soon as they would take something out, she would get worse.  At this point she takes whatever she needs to keep her life functioning, which, unfortunately, isn't even functioning so well right now.   We have been told that Caroline has been unusually difficult to keep chemically stable, so we are also looking at some alternative approaches to help her any way we can (food allergies, etc.).   She has endured a lot.

A dear friend posted a response wondering how the church can help families with special needs kids.  I appreciate her interest, especially as she and her husband are starting a church.  I think the first thing is that pastors and Sunday School leaders, ministry team leaders, etc. need to not just assume that they know what bipolar or aspergers disorder, or autism or severe ADHD looks like.  I would highly encourage them to read a good book written from a medical point of view on each of these disorders.  These kids are complex and their behavior is often interpreted as being "out of control" or just "naughty," and that the parents are exaggerating their lack of control over their child's outbursts or inappropriate behavior.  I read a booklet on brain disorders written by a well-meaning theologian, but I found it somewhat lacking and even offensive because of the overall tone of the book, especially concerning bipolar disorder.  What people really need to understand is that if a person is truly bipolar, whatever they do in a severe manic state is NOT something they have control over.  The manic brain cannot be willed out of mania.  An affected person, child or adult, will regret whatever they do to the point of great shame and despair because their manic actions are often the complete opposite of what they would normally do, and they are devastated by their "altered state."  

Establishing a shadow ministry would  be great.  Many public schools will have a teachers assistant to "shadow" these challenging kids in the classroom.  Many times in the last seven years, Caroline has left our church service suddenly, to go wander the halls or find a quiet room.  A shadow for her would have been fabulous, someone other than the parents, to just follow her and make sure she was safe.  

But even better, we would have loved to have had a separate room with a closed circuit tv of the service, sound-proof, where we could have taken her, while she spread out on the floor, or at a table to draw.  This would be wonderful for a family of a child with an aspergers, or autism, or one diagnosed as PDD or ADHD who really can't sit through a service. The parents wouldn't have to miss out and the children wouldn't disturb others, which can be a big problem and source of embarrassment to parents.  Some have said that they want them to be in the service and free to make noise, but really it is the parents who are suffering, unable to get much of anything out of the service because they are too distracted.  Often churches have a nursing mom's room set up like this, and it's probably time to provide this type of service to our special needs population, not to shutter them from the congregation, but to ease the burden of the parents.  

I adamantly think Sunday School teachers should receive special training for handling these children in class, and also have a shadow to assist them if the child needs a quiet time out in the hall or whatever.  

Youth leaders should definitely be informed about these brain disorders and what these middle school and high school kids might be struggling with, more than the norm.  Caroline has never felt like she has fit into our middle school group because of all of the trauma she has been through.  She feels that she sticks out like a sore thumb. Thankfully she has some adult women reaching out to her and spending time with her when they can.  

And whenever a child is hospitalized for severe depression or mania, it is every bit as stressful as if your child was in a car accident, or had a terrible illness.  Meals would be nice, because I know that my mind freezes up during those weeks and I just can't cook, do laundry, clean.  Nothing is normal.  I call it "zombie" mode.  And you spend a lot of time commuting back and forth and talking on the phone to all kinds of doctors, psychologists, social workers. I don't think many people understand the impact on the family when a child is in a mental hospital.  Your heart is ripped out every day, especially when your child is pleading with you on the phone to come home and you know you can't bring her home yet.  These are the times when I really do scream out loud in the car for God to HEAL MY DAUGHTER!!!!  I trust Him, but I don't understand his plan.

My final thought is that I have often felt people pull away from my daughter and from our family when they don't understand (or don't want to), feel uncomfortable around our daughter, or think that she is too unpredictable that we can't be invited over to dinner, to the beach, or some outing.  I know what they are thinking, that they don't know what might happen if they are around her, but it is hurtful nonetheless.  I have definitely felt far more isolated since her diagnosis.  

Thanks for asking.  I hope that someday these suggestions will be the norm.  

Sundays, part II

I posted that blog accidentally.  What I was going to say after that was that Sundays are particularly hard now because our older kids don't really like our church service(they think it's boring) or Sunday School (ditto).  So getting them to go is a challenge.  I don't completely blame them because of the small number of high school and middle school kids (we are bursting at the seams with babies and toddlers), but we love our church and church family and don't see us leaving anytime soon.  Caroline, with her sensory issues, often leaves the service prior to the sermon because our wonderful pastor can get a little loud (funny loud as well as serious).  So we have tried to find some compromise for her but haven't arrived at the final solution yet.  We never know what Sunday will bring, who will be where, whether someone has to stay at home with Caroline, etc.  I would love just one normal Sunday where we all did the same thing.  I started writing a book about how the church could help families with special needs kids in terms of making accommodations, educating the congregation, etc. I haven't finished it but I will someday.  Our church is still in the early stage of forming a team of people to help on Sundays families with kids who have autism, aspergers, bipolar, severe ADHD, etc.  These children can be quite a challenge, but we want them and  their families to feel welcome, embraced and cared for.

What is it about Sundays?!

I don't know what it is about Sunday, but it is one of the most crazy days of the week for our family.  And it always rains on Sunday here, to make things worse.