When it rains...it pours

Ok...so for anyone who reads this.... this post is just one for me to vent!

I just received notice in the mail that my ex IS taking me to court for a change in custody. He wants to be the resedential parent (he doesn't believe in her diagnosis and wants her off of her meds). I will talk more about that later. My poor daughter feels so torn and confused because he is bad-mouthing me and using every opportunity to turn her against me.

Needless to say, my blood pressure is sky high and after several weeks of my getting it under control and there being another issue and it going back up, I decided to take the meds for blood pressure. I can at least, still nurse my toddler while on the meds.

Almost 2 wks ago, I came down with the flu, got better and then had some strange neurological issue that is still being investigated. I've had headaches, pain and tingling throughout my whole body. I hurt to the touch and only found relief lying down. (not possible with an 'A' and a toddler) Luckily, my doctor found a medicine that has given me some relief. I will be getting an MRI soon.

My stepson is in trouble, and in great need of strong parenting so I suggested that he stay/live with us. I can't even go into it but there was drama here (involving substance abuse) and I'm the only one that seems to give a darn about him. So, we have an extra family member/mouth to feed/additional stress until further notice.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHh!!!!


Ok...I'm done venting....
for now!

School...

Shortly after her diagnosis, I decided to quit my job and go back to school full-time to study special education. I already fell into the field of education and thought it would benefit myself and 'A' if I got a degree in special education. It took me a little over a year to get my degree and within that time 'A' began school.

I was very nervous about her behavior during school but I am so grateful that she had a wonderful kindergarten teacher. I let her teacher and the intervention team know about 'A's' diagnosis. Thankfully, 'A' was able to hold it together in school and did fairly well. The only symptoms that she presented were the ADHD-like ones--hyperactivy, distractibility, impulsivity, and disorganization. Some teachers seem to deal with her well but I made my presence known in the school and there was always ongoing communication between her teachers.

Sadly, 'A' has never had any true friends. She so desperately wants them and often blames me for her not having them. She is excellent about making them but somewhere along the line, she become pushy, controlling, moody and overbearing and they disappear. (She actually gets some of this honest--her father can be very pushy, overbearing, impulsive, and has difficulty with boundaries too)No matter what the family and I try to tell her or help her with, she is still unable to maintain friendships. Just recently, a little boy from school (I'm not too fond of such a precocious child playing with someone of the opposite sex) came over to play and she lost control of herself and spit in his face several times. Needless to say, we haven't seen or heard from him since.

'A' is really such a loving, empathetic, creative and fun child when she's feeling like herself and I just hope that as she gets older, she is able to maintain healthy relationships.

She recently went to her first sleepover and I was so nervous for her. I was so afraid that I'd get a phone call from the girl's mother, that they're not getting along or that 'A' but I had such a wonderful report. (sigh) She even had another little girl stay the night over but the girl was a bit strange and needy and got on 'A's' nerves. 'A' even came to me and said..."maybe she's bipolar too."

Essay from 8th grader with bp

This brought tears to my eyes....

“Daddy, I’m feeling it again…” I whispered through the jet black receiver of
the telephone. My sensation of utter reject and darkness hung in the air. I just
couldn’t believe that I was dealing with these feelings again. Didn’t I already have
enough to handle? “Breath in and out, I’ll be there soon,” I heard Daddy reply
calmly. I sat alone in the school office, feeling as uncomfortable as I did on my
first day of school. I could sense the harsh flutter of the butterflies in my stomach,
and the tears forming in my eyes. Life is not fair, I thought. And I knew that
wishing I had never been diagnosed wouldn’t help, because I would be
Bipolar…forever.

As days turned into weeks and weeks into months, I slowly learned
that Bipolar Disorder was a mental illness involving severe episodes of mania
and depression. I discovered that my moods had the ability to change from
excessively high natures to life threatening sadness in a matter of seconds.
At the start of my diagnosis, I was very confused. I didn’t see how
insecure I came across. I would even find myself hurting others and my family, by
how I acted and responded. I was so unbalanced that I could not last a full day in
school. That year was the worst 365 days of my life. Every moment seemed so
surreal, and I couldn’t handle seeing myself in such bad shape. I felt like I was on
a non-stop roller coaster. The “ups” and the “downs” of my journey were no joy
ride. I knew that I couldn’t change who I was and had to deal with Bipolar
somehow, so I put on what I call my “mask.” Every day at school I pretended to
be perfectly normal, but truly inside I felt like the world was crashing down on me
and the pressure was too much to carry.
Thankfully, over the years I have formed a team; consisting of my parents,
my brother, my psychiatrist, psychotherapist and myself. With this team I find
ways to cope; such as listening to soothing music or journaling my awful feelings.
Just like Jackie Robinson used teamwork to break the color barrier, I too use
teamwork to break through my own barriers. However, due to society’s
misunderstanding of Bipolar, I feel the need to keep “my secret” to the
boundaries of my family.

Bipolar Disorder is a very complicated mental illness. Most people don’t
even know what Bipolar is, and what is included with the infirmity. As a Bipolar
child, my life is different from every “normal” person. I feel emotions much
stronger than most people. I face the wrath of racing thoughts. Sometimes I tend
to think off topic and can’t control the speed or subject on what I am thinking
about. In other ways, I can be so artistic, even Leonardo da Vinci can’t top me. I
thrive in reading, writing, chorus, and dance. I use my creativity to channel my
feelings, as Jackie Robinson used his creativity to write the autobiography, “I
Never Had It Made.”

It is sometimes hard to make friends because I am so different. I am
perceived as arrogant because of my lack of sociality. I am so worried about
myself and how I am perceived, that I rarely have time for others. I honestly don’t
mean to act this way, but I guess it is another annoyance of the disorder. I find
myself struggling not only with my feelings, but with schoolwork and self
confidence. Staying in school is very hard, especially because I am without
friends and I need someone who relates to me. I usually spend lunch alone. If
only I had a class mate that I could share “my secret” with.

I have trouble concentrating because I undergo awful pains. For example,
many days an overwhelming sadness comes about, and I leave the class crying
for no reason. I cannot face other kids when I am that way, because I am afraid
that they will make fun of me. I usually wish that a hole in the ground would just
suck me up, never to breathe fresh air again. Yet, luckily, I have the
determination to continue on through my lifelong status, and the persistence to
grow stronger each day.

Most kids my age lead the simple life and don’t even know it. They are
able to enjoy everyday norms such as schoolwork, sleepovers and dates. On the
other hand, I deal with fluctuating medicine levels, stomach and head aches,
anxiety, the never ending thirst for companionship, blood tests, getting the right
amount of sleep and doctor appointments, twice a week! I pursue this schedule
while still maintaining “my secret.”

Unlike an illness, such as Cancer, Bipolar is not recognized or supported.
Cancer is a painful disease with many loved ones rooting for you to beat it.
Cancer is the enemy, not the person with Cancer. On the other hand, Bipolar is
misunderstood and unaccepted. People are afraid of mental health issues.
People do not understand how hard it is to thrive with this unwanted lifestyle and
many have no desire to learn. It is sad that most of the time Bipolar children are
treated as the enemy, not the illness.

After all I have been and am still going through, I have finally changed my
mind on Bipolar. In the beginning I felt such horrid temptations to simply give up,
but three years later, I am happy that I was diagnosed. Regardless of the many
struggles, I have realized that Bipolar Disorder has turned me into a stronger,
more confident person. I know now that I am ready to take on life’s challenges,
and I hope that one day I will help others from my ongoing experience. I am also
very thankful that my disorder made me who I am today, and has kept me from
giving up on my dreams.

As I sat in that wretched chair, sobbing my eyes out, I heard the familiar
sound of my dad’s footsteps. The next moment I saw his comforting face, and
grasped him in a tight hug. “Things are going to be okay,” he said. A few seconds
passed until I whispered into his ear “I know…because I will never, ever let
Bipolar beat me.”

Blame and guilt

I cannot tell you how many people judged me and my dd based on what they saw of her behavior. Because 'A' was so unpredictable, we'd sometimes have pleasurable outtings and other times...not so pleasurable. I remember walking through Walmart as I was trying to find a place for her to have a meltdown in isolation and some man looked at me and said, "Whip her ass". I think it bothers me more now that I have a better understanding of her and the disorder.

I have had so many family members through the years that have had things to say about 'A' and how they'd "get her together if they had a week with her. " Well, we all know thats simply bullshit and they're idiots!

I just recently got a letter from a close family member whose opinion I respect and appreciate. She informed me that children become selfish and disrespectful if you "spare the rod and spoil the child". I have to say...it was a slap in the face. Even those that claim to understand 'A', don't REALLY understand how complicated and different it is parenting a child with BP.

People's solution is often to beat children that misbehave and they never even think that these children have real issues and battle with self control daily. Look back in history, people with mental illness were often looked upon as evil and were tortured and/or murdered. Thank God we're not living in those times but we haven't moved far enough from that thought.

Up until about 3 months ago, my father blamed me for her fears, anxieties and behavior. I've hung the phone up on him several times for his abusive and discouraging words. I can't tell you what made him realize that 'A' behavior was beyond her control but it is comforting to know that I have one more person that understands and is willing to help.

As if I didn't have enough guilt to deal with surrounding 'A's care, I began questioning my parenting skills. I will always acknowledge that I'm far from being the "perfect parent" and I've made my share of mistakes along the way but I had a hard time deciphering what behavior was due to her disorder or a reflection on me. I punished 'A' and regretfully, I even took other's advice and occasionally spanked her. Nothing seemed to work until I changed my mindset, stopped being concerned with what others thought, removed the negative people from my life, decided to do what worked for MY family and did what helped us move towards serenity in our home.

The diagnosis

I got a call from my mother during her annual vacation at the lake with her grandchildren, asking me to come get 'A'. My mother was miserable and feeling helpless because 'A' was having such a difficult time enjoying the vacation--obsessing over the weather, afraid to leave the cottage, afraid that the other children were going to drown in the lake, and over-stimulated. Water became a huge fear of 'A' by that time and getting her hair washed, swimming, and bathing was always a big ordeal.



After several visits and a series of questionaires and Assessments, 'A' was diagnosed with early-onset bipolar disorder and ADHD. I was relieved and heartsick at the same time. Finally getting my daughter the help that she so needed was a relief but knowing that this would probably be a life-long diagnosis and a disorder that she would struggle with for the rest of her life, was so difficult. I never agreed with the ADHD diagnosis because I believed that the impulsivity, atttention, focus, and hyperactivity symptoms were just part of the bipolar disorder.



She was 4 1/2 when she got diagnosed, a very young age and one that many doctors would not diagnose something as permanent and serious as bipolar disorder. The doctors and I had no doubt that her symptoms and the magnitude of them were enough to make the diagnosis. We felt it was unthinkable to make her suffer any longer or prolong the inevitable diagnosis.



They started her on a low-dose anti-psychotic/mood stabilizing medicine. It was very difficult making the decision to give her the medication. There had been very little research done on using the medications for children and I was very afraid of the possible short-term and long-term side effects. I grew up in a house and family that believed in homeopathy and nutritional/natural healing and it was totally against what I had known . So many horrible things entered my mind and at least a week went by before I even opened the bottle but my mother reminded me of how unhappy 'A' was and persuaded me to give her the meds.



The auditory and visual hallucinations immediately ended with the onset of the medication. I didn't put much focus on the hallucinations because I didn't want to make matters worse but she stopped mentioning them. When I finally asked her about them, she told me that they had gone away. That alone was a comfort to me and a reassurance that I made the right decision to start her on the meds.



The doctor was cautious about dosages and meds because of 'A's' age and I was even more conservative than he was. We eventually switched to other doctors in the practice and although we tried a med in just about every group used to treat bipolar disorder, I was still afraid to get them at therapeutic doses for several reasons. Some caused bedwetting, some caused cognitive dulling, some caused mania, some caused upset stomach, some caused aggitation, some caused depression, some caused rashes. None seemed to stabilize her moods or take the fear and anxiety away. We even tried a stimulant to address the ADHD symptoms and it only caused her to be more aggressive and aggitated so bad that she punched through a window.

The beginning (continuation)....Monster in My Brain

'A' seemed to either be crying or laughing...the fears, paranoia, unhappiness, hallucinations and anxiety continued. Taking her out in public was often a chore and resulted in leaving stores and restaurants because of defiant behavior or a terrible tantrum over not getting the 10 toys she wanted. She began verbalizing her feelings and experiences better and she shared them with my mother and grandmother. She would come to us crying and screaming, telling us that she was "miserable" at age 4. My mother and I questioned if she really knew the meaning of the word miserable but her explanation of "when you feel really, really bad" was enough for us to want to help her. After episodes of tantruming and crying, she was able to talk about her experiences and told us that there was a "monster in her brain "that she "can't get get out"

It always amazes me how insightful children with bipolar are. All you have to do is ask and they can provide you with so much!

I had no choice but to seek help for my suffering child. We first started with a therapist that spent more time telling me how difficult life is being a single-parent and how she believed young children should not be brought out in public. All I wanted was for her to talk to 'A' and ask her how she was feeling and what was going on in her world. Obviously, she was spewing insanity but she still felt 'A's' issues were not in the realm of "normal". So, she referred us to a psychiatrist that sais she was too young to work with and sent us back to the therapist. The therapist referred us back to another psychiatrist that diagnosed her with sensory integration dysfunction, told us that she was very young but would work with us in the future. I was so relieved to finally get help for my "miserable" child but that was short-lived. It turned out that he was just finishing his residency when we saw him and when it was time for us to return, he left the hospital. I felt so helpless...

At this time, 'A's father was graduallybecoming present in her life. It took him quite some time to decide to get his life together. He quit abusing drugs and alchohol and smoking so I felt comfoetable allowing him to be more present in her life. He never seemed to have the same experiences with 'A' that I did but he often heard the screaming and crying on the phone. I made the mistake (I'll explain later) of calling him and allowing him to come over from time to time to help get her calm and into bed.

I still continued my search of finding help for 'A' and decided to drop the therapist that had unrealistic expectaions of parents. My sister told me of a co-worker that had a child that was diagnosed with bipolar disorder and suggested I research early-onset bipolar disorder. Here is the list of symptoms that I found:

• euphoria (elevated mood)—silliness or elation that is inappropriate and impairing
  grandiosity yep


• flight of ideas or racing thoughts yep


• more talkative than usual or pressure to keep talking yep


• irritability or hostility when demands are not met yep


• excessive distractibility yep


• decreased need for sleep without daytime fatigue yep


• excessive involvement in pleasurable but risky activities (daredevil acts, hypersexuality) yep


• flight of ideas or racing thoughts yep


• poor judgment yep


• hallucinations and psychosis yep


• lack of joy and pleasure in life yep


• withdrawal from activities formerly enjoyed yep


• agitation and irritability yep


• pervasive sadness and/or crying spells yep


• sleeping too much or inability to sleep yep


• drop in grades or inability to concentrate later but yep


• thoughts of death and suicide yep


• fatigue or loss of energy


• feelings of worthlessness yep


• significant weight loss, weight gain or change in appetite


• Severe and recurring depression yep (for a 4yr old)


• Explosive, destructive or lengthy rages, especially after the age of four yep


• Extreme sadness or lack of interest in play


• Severe separation anxiety yep


• Talk of wanting to die or kill themselves or others yep (later)


• Dangerous behaviors, such as trying to jump from a fast moving car or a roof yep


• Grandiose belief in own abilities that defy the laws of logic (possessing ability to fly) yep


• Sexualized behavior unusual for the child’s age yep


• Impulsive aggression yep


• Delusional beliefs and hallucinations yep


• Extreme hostility yep (later)


• Extreme or persistent irritability yep


• Telling teachers how to teach the class, bossing adults around yep


• Creativity that seems driven or compulsive yep


• Excessive involvement in multiple projects and activities all the time


• Compulsive craving for certain objects or foods yep


• Hearing voices telling them to take harmful action


• Racing thoughts, pressure to keep talking yep


• Sleep disturbances, including gory nightmares or not sleeping very much yep


• Drawings or stories with extremely graphic violence


• Family history of bipolar yep


• One or more parent that abused substances or alchohol yep

I immediately went to the book store and bought the book, "The Bipolar Child" and it was so helpful for me... The stories and examples had such strong similiarities to my daughter. I felt so relieved to know that we weren't alone in our experiences but it terrified me to know how terrible things could get before they got better.

The beginning...

I was 2 days shy of 23 when 'A' was born. It was a tough road bringing her in the world. I was about 6 months pregnant when I made the decision to leave. I stayed upset and sick and came to the realization that I wasn't only responsible for myself but for the little person I was carrying. It was after a couple attempts at reconciliation, that I decided to move forward with a divorce and a month before she turned one, it became official.


She was 7 days late, I was just miserable and finally decided to be induced after hours of labor with no progress. Even then, it was a long labor. She finally entered the world weighing 8lbs 15 1/2oz (9lbs) and was absolutely gorgeous. I loved being a mother--I settled eaisily and comfortably into the role of a single parent.

To say that 'A' wasn't an easy baby was an understatement but I had nothing to compare her to. However, I knew something wasn't quite right. She had about of week of the normal newborn life-sleeping, pooping, eating. She soon became the baby that never slept, her day consisted of a few cat naps and other than that, she was always awake and taking everything into her round brown eyes. I would always get reactions out of people when they'd ask her age and I'd respond with 12 wks, 15 wks...etc. etc. "She seems so much older", "you're joking", would often be their responses.

Nights were rough she would wake every 20 mins. through the night unless she sleeping right under me. I was living with my mother at the time and after raising 3 children, she was puzzled by this baby that never slept. Crying it out never worked for 'A', I never felt comfortable with it but I was looking for anything to help. Imagine what bliss I was in when I had my second child and she took 3hr naps and put herself to sleep.

'A' crawled and walked on-time, she was speaking in sentences by 15 months. She smiled a lot and cried a lot. The sleepless nights continued through her toddler years. She would wake up several times at night with the look of terror and screaming as if she was being tortured. By age three, she was able to verbalize some of what she was experiencing and by age four her ability to express her feeling in detail, was mind-blowing. By age four, I began my search for help for my troubled toddler.

She still woke up several times at night, only she screamed and cried, threatened, and tantrumed...for hours all through the night. Anything that had a face on it--pictures, blankets, pillows, dolls, etc. came to life and terrorized her. She became paranoid and often came screaming and running into my room telling me that people were trying to kill her.... Then came the voices that never seemed to tell her anything but would utter sounds, whispers and illegible words. Soon after, she began seeing things that weren't there... Now that I think about it, the visual and auditory hallucinations started long before she was able to tell me. Many people just believed the hallucinations were the product of an overactive imagination but I don't know many happily playing children that come running to their parents in terror because they've seen and heard things that weren't really there.


Many of the things that children experience and find pleasure in were the source of anxiety for A. She was hyper-sentitive to everything, mainly sights and sounds. Fireworks were out (a huge source for anxiety), parades, amusement parks, museums, certain people (if their looks were in any way different), Chuck E Cheese, Santa Claus, Tooth Fairy....the list goes on but Icannot thing of the others. The hypersensitivity led to obsessions, which led to sleepless nights, which led to exhaustion, which led to tantrums/meltdowns. It was a viscious cycle that kept getting worse.

Now that I look back, 'A' had a lot of toys because I thought all children should have a toy box or 2 full of them. Toys that if she didn't destroy after a week, she never played with. She would beg for toys...high tech gadgets, V-smiles, personal games, radios, dolls, etc...and when she got them she would find some bizarre way to make them unusable--once she undressed a doll, I knew she'd either destroy it or it would be left somewhere to collect dust. I really think she had good intentions with her toys but she didn't know how or couldn't make use of them......


To be continued

My surreal life...

If you told me a year ago that my life would be turned upside down, I never would have imagined this. I have lived and I am still probably living the nightmare of many parents. No, my child doesn't have a terminal disease like cancer but I am sure many would ponder if what our family is experiencing and enduring is worse. Those that have experienced serious mental illness of family members can only truly empathise but will never truly feel the pain and helplessness of having a child battling through the storm of bipolar disorder.

I have learned so much through my beautiful daughter's 9yrs of life. In the past few months, I have learned and experienced more than I think I wanted to: about myself, my family, my daughter and this ugly disorder. The most important thing that I've learned is that I will never take for granted is something so simple--- stability. Even though my daughter was diagnosed at age 4 with bpd and struggled through her short life....even after reading or hearing horror stories... I just never thought we would be here.

After having to visit my baby 4 different times in hospitals in three months; after hearing her cries of desperation; after having the police come to our home on several occasions; after the death threats to herself and the family; after having to search the house and hiding anything that could be used as a weapon; after many sleepless nights; after walking on eggshells; after being bitten, punched, hit, scratched, called names for hours at a time; after being faced with protecting the rest of my family; after being told that nothing was wrong with her and that I was the problem; after being faced with fighting my ex for my child and her stability; after questioning myself and role as a mother... I've strangely grown closer to my daughter. I have truly been immersed into the storm of bpd and have opened my mind to what patience really is. Through all of these experiences I've had to quickly develop thick skin and have learned to let the small stuff go.

I continue taking it one day, sometimes, one minute at a time but it comes with the territory of being a mother. Unconditional love and true sacrifice. I am not a very religious person but I pray everyday and try to stay positive and hopeful that we will live through this...that we will grow...that my daughter will know herself and be a healthy, happy and successful person.