Trying not to fall into the dark hole of instability but not sure how long we can hold on...

I haven't had much time to write....I've been super busy with life--work, appointments, homework, lessons, work, appointments, homework, lessons and so on.....you get the picture.

Very condensed version. The past few months have progressively gotten more difficult. We had an amazing trip to Florida where 'A' had her first plane ride, met her new grandparents, and visited Disney. She did amazingly well!!! There is some correlation between her instability and her father--she speaks of how she hates him frequently everyday(I know that she loves him) but he is really making her world difficult. Last night was her first tantrum/meltdown/rage--or whatever you want to call it. She complained of her head and ears hurting afterwards. Today, she was manic...doing bizarre things like locking herself in the closet, making strange noises, laughing uncontrollably, eating ravenously and just going a mile a minute. Please send positive thoughts her way because I'm unsure of where to go from here.

More to come later--visitors tomorrow and I have a messy house.

I F*&^ing HATE Dr. Phil

Besides being an opinionated prick, he lives to exploit families that are desperate to get help for their various issues. Dr. Phil once again had another show on children with mental illness, mainly focusing on parenting a child with mental illness. It makes me sick when he does these shows because he almost always points the finger at the parents. He didn't do that this time but still managed to piss me off and spout more fucknuttery.

First, he began by playing footage of a child in a rage and he called it a "tantrum". In the next segment, the parents disclosed the child's diagnosis of bipolar disorder. Dr. Phil had to add that the DSM (manual for diagnosing mental illnesses) does not provide diagnosis criteria for children, as if he was agreeing that children cannot have severe mental health issues like bpd. He also went on to express his disapproval of them labeling themselves with a mental illness because of the stigma attached to mental illness. Hmmm....lets think about this. These children have a legit mental illness where one of the symptoms is rage and he downplays it and labels their behavior, as if they had a choice, as a tantrum, and Dr. Phil worries about how others will treat them. A child with bpd and a parent of a child with bpd doesn't want to be told that their suffering child is just having a tantrum.


Then to make the show even more amusing, he has another psychologist go backstage to talk to the children and he came to resolve that they should try to get alon with one another and control their emotions a little better. HA! Would you tell a person with schizophrenia to stop hearing voices? To make this better, the psychologist is the author of the book, "Retraining the Brain". Hmmm, I'm no mental health professional but, bipolar disorder, schizophrenia, ADHD, etc... are brain chemical issues and are WAY beyond just "retraining the brain". Fears, phobias, panic attacks, Pica, Cleptomania etc... (without the presence of any other serious diagnoses) are issues that can possibly be treated by "retraining the brain.

Thank you Dr. Phil for another superb show!

Join us on Jani's Journey

Join us on Jani's Journey

A lil bit of everything....

The other day, I went to a workshop led by the author of "Exlplosive Child" and it was held at the Children's hospital where 'A' was admitted to twice, earlier this year. During the break, I walked around the lobby and looked up to the psych unit where 'A' spend many nights and saw the window of the room 'A' stayed in. I couldn't hold back the tears; the feelings of frustration and helplesness came back to me. I am still not at the point where I can think about what our family has been through and not cry. I dropped her off at school a yesterday and tears began streaming down my face, thinking about where we've been, how much better things are, and what the future could hold. I'm just a hot mess! :)

'A' continues to do better and she is actually learning and applying what she is taught in therapy. Understanding this illness has been so empowering for 'A'. I also find that the more stable she becomes, the closer she gets to me and further away she drifts from her father.

She is taking three different medications and supplements and the only obvious side-effect of the one med is weight gain. The one medication that she takes is mainly to counteract the weight gain but it doesn't seem to do much. It's hard to see my naturally slim child put on so much weight and so quickly. I've always had difficulty with my weight and I dont want her to struggle with all that comes with being overweight. I know how it hurts when someone describes you as, "well, the one with a very pretty face".

Court....I had pretrial #3 and it's still not over. This has gotten to be terribly expensive and emotionally draining and our next trial won't be for 3 months....ughhh I have come to the realization that this isn't even about Aminah anymore...it's his attempts to make me unhappy. It's been 9yrs....the guy needs to get a life and a GIRLFRIEND!!! Looks like I will have to draw from my retirement fund to pay the attorney and to continue paying the medicals bills that HE is responsible for... SIGH

Young adults may outgrow bipolar disorder

Young adults may outgrow bipolar disorder

Shared via AddThis

'A' during one of wonderful lessons!

NAMI Walk

There was a total of 20 on my team, including children and dogs that did the 2 1/2 mile walk! What wonderful and supportive family and friends I have.

She came back....

It was like night and day and from the depths of darkness, misery and true desparation, my beautiful lotus flower emerged. I have always liked the significance of the lotus flower in various cultures and shortly after she was diagnosed with bp, I got a lotus tattoo on my back with 'A's name.

Just when I thought my family couldn't endure any more, it came to me that I let 'A's' supplements run out, thinking that they weren't doing any good. So, I reintroduced her supplements and within 2 days, she was a different child. I got my happy and sweet baby back! She was affectionate, loving, sweet...she was 'A'!!!

I was so afraid to exhale for fear that it wouldn't last. I still slept with one eye open and was more than anxious. Everyone was afraid to even mention how much better things were for fear that we would jinx things.

Things did turn around BUT they didn't go back to our darkest moments. Intensive therapy, meds, supplements, routine, horseback riding, her understanding of her condition and unconditional love has helped tremendously. I don't think the supplements alone were enough nor were the medications but together...what a difference they make together!!!! I do sleep better now and I'm probably still trying to make up for my many sleepless nights. We're not 100% stable but I doubt if we will ever be...it's all relative anyway, right?

So many lessons have been learned through this unending voyage of life. My biggest lesson learned is to never, never ever take things for granted and to acknowledge and be appreciative of little things.

I believe in positive thought and energy and have no doubt that this has contributed to our wellness and "stability". Thank you for all that have prayed and sent your positive energy our way. I say "our" because my whole family and friends have felt 'A's' pain and have endured it with her. Now, I'm just fighting her father for her stability. He still remains in denial of her diagnosis and treatment and has taken me to court to get custody of her. I just had pretrial 1 of ????? I look forward to the day when all of this is behind us and I can quiet my mind knowing that I no longer have to fight in this battle. Please continue to send positive thoughts our way.

What is bipolar rage???

I've talked about 'A's rages but it's so difficult to describe them. I don't wish my worst enemy (well, maybe 1 person)to experience a bp rage. For 'A', I got to a point where I could sometimes see them coming by the wild look in her eyes or her overall mood/actions. I've also learned to be mindful of her triggers. Often, the word "NO" would send her off or not being able to do something that she wanted.

Here is how one book describes a bp rage:
* Often happen at night
* Roars out of nowhere at the drop of a hat
* Takes a predictable course through build-up, explosion, and exhaustion
* Volume of rage is great and could not be imitated
* Gory thinking occurs
* Precious objects are often destroyed
* Child will report the build-up of rage as a sense of heat
* Rage is felt as an entity that takes over the child
* Can be felt as pleasantly energizing for some children
* During rage, child has highly paranoid attitude

Research on bipolar disorder, mainly pediatric bipolar, still appears to be in an early stage. However, they have found that there are differences in certain areas of the brain-mainly the limbic system. This is the primitive system (all animals have this region) of the brain, responsible for recieving sensory information, initiating emotions and sexual behavior which lessens the function of the frontal lobes of the brain (areas of reasoning). Often, "animal" instincts are hightened during certain periods or stimuli which results in a rage. Someone described a rage to me as a primal effect of the brain adjusting the chemical flow. Research has also found that children with Tourettes and Seizure disorders also have the same deficits and overactivity in the brain. This is why individuals with bp are often treated with anti-convulsants because they act as mood stabilizers. There is still so much research to be done!

Here are the stages of a bp rage:

1. DYSPHORIC PHASE- irritation, nothing is comforting, hyper, pestering whining, tormenting others

2. PROVOCATIVE PHASE- Looking for a fight, devilish facial expressing, interrupting phone calls, slamming doors

3. EXPLOSION PHASE- screaming, crying, dilation of pupils, death threats, threatening with objects, wild evasive behavior (This is the point of no return)

4. EXHAUSTION PHASE- child collapses and appears dazed, falls asleep for a period of time, doesn't remember what happened, often remorseful or will not talk about what happened


I'm more than relieved to remark, we only experience phase 1 and 2 now. Although, we've had a setback with the new school year. I hope to get on a routine and with the implemenatation of her IEP (individualized education plan), she will find success and maintain her level of stability.

Residential Treament Center?

'A' spent 3 weeks with her father and during that time I was a miserable wreck.
The thought of sending her to a residential treatment center entered my mind in the past and having no choice but to send her seemed inevitable. I had so many obligations to fulfill...keeping my family healthy and safe and being a nuturing parent was top priority. Before the rage of all rages occured, I had already researched centers and communicated with my insurance company. I was more than shocked when they were very accommodating and helpful in my pursuit to find help for my daughter. The one residential center that others were very pleased with was all the way in Texas but I was growing increasingly desperate to get the help and willing to take her wherever I needed. I have credit cards!! The only thing was, I needed a reccomendation from 'A's psychiatrist or therapist.

When I mentioned an RTC to the social workers, they made it clear that they would not make the recomendation nor did they think that it was an option for one so young. Their case was that 'A' was too young and was still in the formative years where a child needs the care and nuturing of a parent. My case was that she was so unstable that her getting nuturing from a parent was not even a possiblity. Her psychiatrist wasn't ready to make the recommendation even though taking 'A' to see the psych was becoming more and more of challenge. Talk about feeling absolutely vulnerable and hopeless. All that I could do was pray and have positive thoughts about our reunification.

Before this episode, I thought that instability would have been behind us and 'A' would have been better so I planned a respite trip for my husband and youngest to visit his mother in Florida. I have to say...that was the most miserable trips of my life. I was still an emotional wreck and everytime I thought about 'A', tears would fall. She called me several times during the trip, telling me how she wanted things to change, asking me to come home and trying to plan her return home.







It was during this time that my ex called 'A's doctor to have her meds decreased and then accused me of saying I wanted 'A' sedated. ME OF ALL PEOPLE?!?! I absolutely hate the fact that 'A' has to take such heavy duty medications and I've tried everything within my power to keep her away from the meds, and I had been very conservative about the meds/quantities but it's a neccesity for her own health and well-being. So, I heard from my family (because he called everyone in my life to lie about me) about his accusations and the fact that he thought that nothing was wrong with her and wanted her off her meds. When I say I had a miserable time....I mean I had a miserable time!!! I couldn't wait to come home---to insanity from everywhere but I just needed to be home!

'A's father was not happy when I told him that 'A' needed to come back home and his response was that he wanted her to stay with him for a couple years because "A' and I weren't getting along". He also went on to tell me of his plan to take her off her meds because "she didn't act that way with him". Well, that's bullshit! The episodes weren't as intense but he called me with her screaming in the background and him in a panic. He's told me of incidents for years. She even has called me to tell me of episodes. My response to him was...that I am the closest person to 'A' and as difficult as it is for me, I am the one that she feels most comfortable unloading her upon. I also explained, as her doctors and therapists have tried explaining...it would only be a matter of time before she began unloading on him. My fear was that he wouldn't be able to handle her rages as well as I have.

I was hopeful yet tentative when she returned home. I had rehearsed in my mind all of the ways I could avoid a rage by eliminating the word "no" from my vocabulary...because we all found out 'no' was a huge trigger for her. I think that she was home 1/2 hr before she lost control. I can't even tell you what brought it on....because there was NOTHING. She began screaming, running, throwing objects, searching for knives and clearing tables. My husband and I just looked at each other in disbelief. The baby started screaming and crying in fear. We had a plan that I would handle 'A' while he took the baby outside or some place safe. My job was to keep 'A' away from them and to protect her from harming herself. I ended up having to restrain her and during that time, 'A' spit at me, bit me and said some darn right hurtful things. It must have lasted about 1 1/2hr. When it ended, I looked at the bruises on my arms, the exhaustion from having to deal with her set in and I lost control and broke down in tears. 'A' put her arms around me and we hugged as tears ran down our faces. I told her that I loved her very much and wanted her to help me help her.

The doorbell rang and it was 'A's teacher of all people, to drop off some papers that I asked for. When I spoke to her after her visit, she told me that she could tell by the look in my eyes and face that 'A' must have raged before she came.

I was so exhausted from having to sleep with one eye open. My mind wouldn't allow me to sleep. I kept the monitor close to me and on high. Although 'A' loved her baby sister very much, her instability made me unsure of what she was capable of doing to her or the rest of the family. Things got so bad that I could not be left in the house alone with 'A'. Thankfully, my neighbors would help me with the baby when they were home but I couldn't expect or rely on them. I've heard about parents suffering from post traumatic stress disorder. I have to think that I was suffering from it for some time.

Squalene: The Swine Flu Vaccine’s Dirty Little Secret Exposed

Squalene: The Swine Flu Vaccine’s Dirty Little Secret Exposed

Shared via AddThis

I will admit that part of 'A's disorder is hereditary but I also believe it's environmental. This is serious stuff...we REALLY need to think about it!!!

The forbidden word--'NO'.

The day after 'A' came from the hospital was draining. I didn't send her to school that day because she was still seemed volatile and needed to be transitioned back to school. She stayed with my mother who later told me that 'A' was very oppositional and insisted on eating. We later went to the mall and all she could think about was stopping at every food shop there. This is a symptom of bipolar disorder and a side-effect of her meds. Later that evening, we spent some family time together and she became playful with my husband and it quickly turned to aggression. I warned her to stop but she refused to or was unable to stop. I sent her to her room (I followed), she shouted suicidal thoughts and opened the window and began climbing out until I restrained her. She began biting and threatening me which then led to her asking me to strangle her. I somehow got her settled but her mind was racing a mile a minute. She eventually got sleepy enough for me to leave and she awoke at 5am the next morning. At some point during this period, 'A' started scratching herself on her face and arms and it was so troubling to add self-mutilation to her list of issues.

When 'A' woke up, she wanted EVERYONE to wake up with her. We woke up to her screaming at us and insisting that we wake up and make her breakfast. She really wanted to get everyone involved with her instability and she manipulated in any way to bring us with her. She found a lighter and gave it to her baby sister and found scissors to threaten with. The days were an unending and exhausting roller coaster of de-escalation, restraint, and guarding everyone in the house from her exploding emotions. Her episodes would often last for several hours which would result in me chasing her around the house and restraining her. I swear--I should be a size 4!!!

One day after school, 'A' got off the school bus aggitated and ready for a fight as she always was. She wanted to have an easter egg hunt then go to Sonic. I told her that her social worker was coming shortly and the easter egg hunt wasn't going to happen. Well, she began to scream and run through the house... but the doorbell rang and she stopped but began again.

I couldn't believe that she was actually displaying this behavior in front of someone else. It's always been our family secret that some only hear of or just overheard in the background. She sliced walls with a pizza cutter, gouged holes in the walls, emptied drawers and cleared shelves. After all these years, someone else was witnessing a rage and it was an intense one! 'A' laughed, cried, screamed, threatened, lied, manipulated and cycled through all these emotions for what seemed like, forever!

I stupidly listened to the social workers advice and locked myself in the bathroom. What a mistake!!! 'A' tore apart the house while the social worker observed from a corner. All I heard was the same screaming and doors slamming and things being thrown and walls being beat on. I couldn't take it anymore and when I opened the door my jaw dropped. The house was trashed and 'A' was still on a rampage. I had no choice but to try to restrain her. About 2hrs later, she got sleepy like she often does after a rage and I was able to let her go where she ran upstairs and uttered some intelligible words and was about to go for round two.










The social worker got her calmed down. She called 'A's dad and told him that he needed to come and get her. He came and took her with him. He kept asking me if this was it with me and 'A'...I couldn't answer that question. I was in shock....my husband came up and saw the damage and couldn't believe we let it happen.... it is still so surreal.

Back to 'A' and back to the hospital....

This period of time has become a blur to me but...
I do believe a couple weeks went by but 'A' was still very unstable. The things that she once enjoyed became undesirable and the tasks that were not issues, became issues. She cried and screamed and threatened so often. There were many incidences where I probably should have called the police or taken her to the hospital but they were no help.

Heavy wood chairs were picked up and thrown, death threats were screamed...she was miserable. When I thought the situation couldn't get any worse...they did. In one moment of helplessness and exteme emotion, she picked up a knife and took off running with it. She got a wild-eyed look on her face, threatened, laughed, screamed and stabbed walls until I was able to get the knife away from her. I never thought that she'd get to that point...it's still so surreal but a reality because our knives are still locked up to this day!

One saturday, I cannot tell you what led to the incident but... it got bad. She grabbed a very large knife and went around slicing walls again. I could not get the knife from her, I feared what she could do, threatened to call the police and when she didn't drop the knife...I called 911. I kid you not....they must have sent 4-5 cars....THE NEIGHBORS WERE SO CURIOUS. 'A' dropped the knife as soon as the police came to the door and there I was answering the door with a large knife in my hand. 'A' broke down again and sobbed while 2 police sat and talked to her while the others spoke to me. They were more than kind and empathetic. When they asked her why she did what she did, her response was, "I wanted my way". They suggested that I have the ambulance take her to the hospital or that I take her. I called around to the different hospitals and found a different one. By this time, 'A' had passed out...something that was very common after she had an episode.





Two officers stayed until shortly before I left for the hospital. By this time, we were experts about going to the hospital and 'A' was as pleasant as she could be on the car ride. She was just as agreeable and pleasant in the hospital which made it very frustrating. I knew I shouldn't be frustrated because she couldn't help it but I think some probably thought I was crazy.

Several doctors came in and asked her many questions and then made the suggestion of admitting her. When we got to the ward, she was again, very agreeable and the nurse that admitted her, was more than nice. There were patients walking around, looking like zombies...it was so hard to leave her again but she was NOT safe at home.

Her father visited her during early visiting hours and he spoke to her doctors and social worker. I guess from what her father told the doctors, they were convinced that nothing was wrong with her and that she wasn't bipolar. I made an appointment to talk the social worker and doctor the next day. I came with support--from my mother, husband, and social worker...all people that knew and experienced 'A's behavior. After giving the history, the social worker seemed overwhelmed but the dr. wasn't willing to budge. I have no clue what made him change his thinking but he did budge and prescribed her Lithium--a classic medication that has been the topic of a lot of research. I asked that they keep her as long as possible so that they could monitor her in hopes of not having to send her back.

When my ex spoke to the social worker before I got a chance to meet with her, he told the social worker and 'A' that she would be living with him. Something that I did not agree upon and was not reccomended by anyone. His whole reasoning was that 'A' didn't behave the same way with him that she did with me. Ok...but like every dr. and therapist has tried to explain...she eventually will not be able to control her emotions/behavior, once the "honeymoon" phase is over. I guess he spoke against me because she repeated some words that only he would have said and shared some things with her that he should not have.

Another Dr. evaluated 'A' and called me to tell me that he had no problem diagnosing her with bipolar disorder. All he had to do was talk to her and realize that her, "I wanted my way" attitude was more than just that...it was one of the prominent symptoms of bipolar-grandiosity. Only grandiosity is often displayed as a child jumping off of a roof, believing they were superman but the undermining and opposition of authority is also a form of grandiosity. Why didn't I or anyone else realize this?!!? It was such a relief to have some understanding and insight from someone was WAS a medical professional!!! It was getting to the point where I felt like I knew more than the doctors after so many years of research and advocating for my child.

'A' stayed 5 nights in the hospital before they had no choice but to release her. She didn't appear to be unstable or psychotic so the hospital had to make room for children in immediate danger/need. I crossed my fingers, took a deep breath and held it.... It couldn't get worse....right?

NAMI | NAMIWALKS

NAMI | NAMIWALKS

Shared via AddThis

The Noise....

'A' screams a lot nowadays...A LOT. It gets to be overwhelming for everyone in the house. Sometimes things can be quiet and calm and out of nowhere a high pitched wail comes out of nowhere. Along with the screams come calling out for her daddy.

I'm not quite sure what is going on in her world but I wish she could verbalize things better than screaming. We have made it a point not to raise our voices or yell in the house and to stay calm but it seems it has gotten out of hand. Her baby sister is learning how to scream and she balls her firsts up when she does it.

I love 'A' very much but we all sometimes look forward to the 2 days of respite when she's away with her dad so that we can get some semblance of calm and QUIET...

I just have to keep reminding myself that although things are far from perfect...they sure aren't what they were at their worst!

Bet you didn't know...

All of these people have/had bipolar disorder. I decided to post this after 'A' asked me what she should be when she grows up. I told her that I didn't want her to choose mine or her father's professions unless she REALLY wanted to. I believe she chooses things we like to please us(mostly her father) but I believe she should have her own identity and find what she's good at and wants to do. So...here's the list...

Actors & Actresses

Ned Beatty
Maurice Bernard, soap opera
Jeremy Brett
Jim Carey
Lisa Nicole Carson
Rosemary Clooney, singer
Lindsay Crosby
Eric Douglas
Robert Downey Jr.
Patty Duke
Carrie Fisher
Connie Francis, singer and actress
Shecky Greene, comedian
Linda Hamilton
Moss Hart, actor, director, playright
Mariette Hartley
Margot Kidder
Vivien Leigh
Kevin McDonald, comedian
Kristy McNichols
Burgess Meredith, actor, director
Spike Milligan, actor, writer
Spike Mulligan, comic actor and writer
Nicola Pagett
Ben Stiller, actor, director, writer
David Strickland
Lili Taylor
Tracy Ullman
Jean-Claude Van Damme
Robin Williams
Jonathon Winters, comedian


Artists

Alvin Alley, dancer, choreogapher
Ludwig Von Beethoven
Tim Burton, artist, director
Francis Ford Coppola, director
George Fredrick Handel, composer
Bill Lichtenstein, producer
Joshua Logan, broadway director, producer
Vincent Van Gogh, painter
Gustav Mahier, composer
Francesco Scavullo, artist, photographer
Robert Schumann, composer
Don Simpson, movie producer
Norman Wexler, screenwriter, playwright

Entrepreneurs

Robert Campeau
Pierre Peladeau
Heinz C. Prechter
Ted Turner, media giant

Financiers

John Mulheren
Murray Pezim

Miscellaneous

Buzz Aldrin, astronaut
Clifford Beers, humanitarian
Garnet Coleman, legislator (Texas)
Larry Flynt, publisher and activist
Kit Gingrich, Newt's mom
Phil Graham, owner of Washington Post
Peter Gregg, team owner and manager, race car driver
Susan Panico (Susan Dime-Meenan), business executive
Sol Wachtier, former New York State Chief Judge

Musicians

Ludwig van Beethoven, composer
Alohe Jean Burke, musician, vocalist
Rosemary Clooney, singer
DMX Earl Simmons, rapper and actor
Ray Davies
Lenny Dee
Gaetano Donizetti, opera singer
Peter Gabriel
Jimi Hendrix
Kristen Hersh (Throwing Muses)
Phyllis Hyman
Jack Irons
Daniel Johnston
Otto Klemperer, musician, conductor
Oscar Levant, pianist, composer, television
Phil Ochs, musician, political activist, poet
John Ogden, composer, musician
Jaco Pastorius
Charley Pride
Mac Rebennack (Dr. John)
Jeannie C. Riley
Alys Robi, vocalist in Canada
Axl Rose
Nick Traina
Del Shannon
Phil Spector, musician and producer
Sting, Gordon Sumner, musician, composer
Tom Waits, musician, composer
Brian Wilson, musician, composer, arranger
Townes Van Zandt, musician, composer
Nina Simone

Poets

John Berryman
C.E. Chaffin, writer, poet
Hart Crane
Randall Jarrell
Jane Kenyon
Robert Lowell
Sylvia Plath
Robert Schumann
Delmore Schwartz

Political

Robert Boorstin, special assistant to President Clinton
L. Brent Bozell, political scientist, attorney, writer
Bob Bullock, ex secretary of state, state comptroller and lieutenant governer
Winston Churchill
Kitty Dukasis, former First Lady of Massachusetts
Thomas Eagleton, lawyer, former U.S. Senator
Lynne Rivers, U.S. Congress
Theodore Roosevelt, President of the United States


Scholars

John Strugnell, biblical scholar

Scientists

Karl Paul Link, chemist
Dimitri Mihalas

Sports

Shelley Beattie, bodybuilding, sailing
John Daly, golf
Muffin Spencer-Devlin, pro golf
Ilie Nastase, tennis
Jimmy Piersail, baseball player, Boston Red Sox, sports announcer
Barret Robbins, football
Wyatt Sexton, football
Alonzo Spellman, football
Darryl Strawberry, baseball
Dimitrius Underwood, football
Luther Wright, basketball
Bert Yancey, athlete


TV & Radio

Dick Cavett
Jay Marvin, radio, writer
Jane Pauley

Writers

Louis Althusser, philosopher, writer
Honors de Balzac
Art Buchwald, writer, humorist
Neal Cassady
Patricia Cornwell
Margot Early
Kaye Gibbons
Johann Goethe
Graham Greene
Abbie Hoffman, writer, political activist
Kay Redfield Jamison, writer, psychologist
Peter Nolan Lawrence
Frances Lear, writer, editor, women's rights activist
Rika Lesser, writer, translator
Kate Millet
Robert Munsch
Margo Orum
Edgar Allen Poe
Theodore Roethke
Lori Schiller, writer, educator
Frances Sherwood
Scott Simmie, writer, journalist
August Strindberg
Mark Twain
Joseph Vasquez, writer, movie director
Mark Vonnegut, doctor, writer
Sol Wachtler, writer, judge
Mary Jane Ward
Virginia Woolf

Words from another parent...

I am a member of a support group that has been more than helpful and supportive. It is so comforting to know that I'm not alone and the things that my child and my family experiences, others have. When I need to vent or insight, I come to these wonderful people and they've never let met down! Here is a wonderful and insightful post from someone in my support group...

When dealing with all types of illnesses their is a huge amount of fight in accepting what we have to deal with, there are the phases of grief that are all turmultuous no matter how well we appear on the outside. Once we arrive at the acceptance of whatever our circumstance it is always sweet relief that we can rejoin our life with others walking down our path.

I am watching my sweet child work through the phases of grief and he has for the most part moved through quickly, bumping far backward occasionally, but working hard to move forward. He has begun to try to wrap an eight year old mind around a huge amount of adult issues and questions, he is wanting to know the difinitive answers to questions that no one can answer "how long will I have this (bipolar)", "Will I ever be able to do anything that i want to do when i grow up?", "Can I get married and have children?", "Can I ever not have to take meds?", "Will I die from this?". Unfortunately, We cannot answer those questions for him. In the last week, he has been attending day treatment, and it has been a difficult journey of self examination that many do not experience until they are adults. He asked me a question the other night after a brief bout of argument, that was so disheartening "what do you guys want me to do, rock in a corner for the rest of my life?" . He, for so long, wanted to be in the military, a police officer, then wanted to be a game warden. Unfortunately those careers are not always available to those with mental illness, and my child has had to find this out the hard way, through friends and the internet.

I have also had to walk this journey with him, as I have also had to accept this illness for what it is, I have had to time and again accept that my child probably will not be the star quarter back who marries the prom queen, that he will probably always be different than everyone else, and that there may come a time for some decisions that I still have trouble not turning a blind eye to. I have no choice as my childs mother to love him and that love comes with so much pain that at times I want to thow myself into a rage. I feel great desperation and drive to help my child understand this illness before it eats him alive. I just want him to be better, and it scares me to think what life might be if he doesn't. I understand his questions and fear and saddness, and can only console him with thoughts of the positive and how many have been able to live with this forever. I tell him you will make it because you are too strong not to. So we have a long haul and i am preprared with my knapsack and water bottle and mounds of tissues to take this journey with him, to walk, run, kick and scream until someone can make that scary darkness that follows so close behind us I think it might swallow both of us sometimes, but we can fight because if there is a big uphill there is always the sweet relief of downhill... and that downhill will be welcome when we get there. As Paul Coelho wrote; "But there is suffering in life, and there are defeats. No one can avoid them. But it's better to lose some of the battles in the struggles for your dreams than to be defeated without ever knowing what you're fighting for. "

The many reasons why I love 'A'

I feel like I've spent so much time dwelling on the horrible aspects of bp with 'A' that I need to tell you what a wonderful and beautiful girl she is!

I think that she is absolutely gorgeous... Big beautiful round brown eyes, curly dark hair, a beautiful smile...what more can I say?

She has always been a creative person...always into something or creative something new. Her kindergarten teacher said she was the only child that made sushi out of her play doh. I know that for some reason, she's not comfortable singing around me but I've heard her voice and it's beautiful.

She can also be the most loving and affectionate girl. She's not afraid to tell you that she loves you and has proven to be a great big sister. Her baby sister absolutely adores her....she's always calling her big sister's name!

'A'also has an unbelievably empathetic mind. From the time that she was a little, little girl she's always felt other's pain and had concern for others. If she saw someone in a wheelchair or disabled, she'd show such great concern and want to help them. Even now, she's always willing to help her 95yr old grandmother and offer an encouraging word.

I see so many possibilities for 'A'....my role is to help her focus on them, guide her and to support her.

Back to the hospital...

When we arrived at the hosptial, 'A' refused to leave the car and after much coaxing, I was able to get her out of the car. When we arrived to the ER, it was crowded and I had to check-in with 'A' hitting, pushing and biting me. They allowed us to come right back and got security to make sure she didn't get too out of hand. Several, nurses, doctors and social workers came to assess 'A' and eventually admitted her.

We were escorted to the psych unit by an officer. The nurses were surprised to see her back and 'A' really didn't want to be there a second time. We went through the same process of admittance and before I left, I told her I loved her and kissed and hugged her goodbye. I was again, physically and mentally drained.

I visited her in the hospital the next day and my husband and I both spent time with her while one stayed outside the unit with the baby. She was in good spirits again and enjoying spending time with the other children there. 'A' and her sister waived to each other through the window before we left and it was heartbreaking to leave there without both of my children.

The next morning, I met with a new social worker who appeared to be very nice and very helpful. I also met with the head psychiatrist for the unit. I explained why we were back and how I warned the previous psychiatrist about giving 'A' a stimulant and how it triggered mania. He mentioned a certain organization that offered intensive therapy but I had already checked into it. My insurance was not excepted there and we had to pay out-of-pocket. He encouraged us....let's keep it real...he threatened to call CPS if we did not get services from that organization. Talk about loading on the stress and helplessness.

The next day, the psychiatrist called me and told me that they were going to remove the stimulant and try a new anti-psychotic. He also expressed his disbelief that she had bpd and encouraged me to call the police and press charges against her next time she got "out of hand". I could NOT believe what I was hearing. I later spoke to the original social worker that I worked with and asked her if he was serious about his statement. She told me that 'A's situation was difficult and that because 'A' didn't display the negative symptoms with him, then her issues were behavioral and not emotional. She went on to tell me of how it's sometimes is beneficial to file unruly charges and have the children go before a judge. UNFUCKINGBELIEVABLE!!!!!

I should be put in jail for filing unruly charges against my 9yr old daughter with a mental illness. Should parents file unruly charges against their children if they have asthma attacks, seizures, our tourettes??? Talk about feeling helpless...I was a wreck.

I did call the organization that offered intensive therapy and we worked out payments based on a sliding-fee scale. 'A' was released from the hospital after 4 nights. She told her father that she was going to behave with a capital B. I didn't want her to feel like she was a "bad girl" because I knew she couldn't control her emotions and I knew she wanted to keep it together but....

A must see and listen....

I just wanted to post this video/song. Eva Cassidy did the best rendition of "Wonderful World". Hearing this brings tears to my eyes... She totally made this song hers. Don't know why but this version really touches me.....
I hope you enjoy it half as much as I do.

My faith....

I felt like I needed to write this post because something that a good friend said has weighed heavy on my mind. I consider myself a Christian probably because I grew up going to church and it became an important aspect of my life and culture...I want to believe that there is a God and I believe that Jesus believed that he died for our sins. blah blah... However, I'm not an ultra-religious person...I don't go quoting the bible, I don't try to tell people that they're wrong because God or Jesus didn't do such things, I try not to be too judgemental, and I try to keep my mind open. I've done research on various religions and have come to respect and admire all aspects of various religions. My belief in the words of the bible are very limited--I believe it's simply a book of virtues or mythology. Every culture since the beginning of man has tried to find explanations to the happenings of the world and reasons for man's actions. Who am I or you to say whether or not my religion is better than yours? Isn't it simply about respecting one another, not judging one another, loving each other and doing what is right?

I guess I've seen so much judgement, people segregate themselves from each other and families divide in the name of religion. Does declaring yourself "saved" really make you better than others and/or closer to God? I've seen a lot of hypocrisy and scandal come from the church and I've seen many "saved" people do some pretty "sinful" and destructive things.

So...back to my good friend.... I was somewhat giving her an update of what was going on in my life and she actually uttered the 's' word and how I need to be...SAVED. She also went on to explain the reason for all the difficulties in my life being simply because I wasn't "SAVED". Oh but wait...she even told me locusts will begin to appear. OMG!!!!!!!!!

My friend has had a rough couple years, caring for a mother that had cancer and eventually succumbed to it this year. People tend to find religion to help them through rough times. What she experienced with her mother was terrible and I have noticed that she has become more religious in the last year...I totally understand. But, to blame life's difficulties on a person not declaring themselves "saved" is so ridiculous. Bad things happen...terrible things happen to good people. Good things sometimes happen to bad people. People rely too much on God and religion to get them through when it's God that gives people the ability to get themselves through. This post is not to offend anyone and should my good friend happen to read this one...I hope that she is not too offended.

I pray every night and try to include those that are in need in my prayers. I believe in positive thoughts turning into positive energy. I've witnessed the power of positive thoughts. I would like to get back to my spirituality--being more tuned into my surroundings, learning more about other religions, creating more positive energy and taking what I can out of everything to create serenity and harmony within my environment.

Her homecoming...

It was comforting to have 'A' home. She was very glad to finally be home and told us of what she experienced and learned in the hospital. She called just about everyone in the family to tell them of her adventures in the psych unit and gossiped about the others there too. It was there that she learned about cutting...she had a 12yr old roommate who told her all about it.

Towards the end of the of the evening, I noticed her becoming more volatile but she felt comfortable and aware enough to tell me how she was feeling. She began crying, it came out of nowhere and she wasn't able to control it. She didn't feel comfortable sleeping in her room so she cried herself to sleep in the hallway until I put her back to bed in her room.

I tried calling the psych unit and they were no help. I later found out that psych units are only to "stabilize" and discharge. They claim that insurance companies force them to discharge ASAP and the insurance company denies it. They truth is, they could care less what happens outside of the unit.

We were so greatful that 'A' had such a wonderful and devoted teacher that always kept in contact with us. When I asked how her week was going, 'A's teacher told me that 'A' wasn't able to sit still or stay quiet for any length of time and that she was a wealth of information. I imagine she was telling all of her and the rest of the family's business. I crossed my fingers and prayed that 'A' wasn't becoming more unstable but it was only a matter of time that her depression and crying turned into rage.

As each day passed, her instability became more severe. We couldn't get in to see her psychiatrist, who moved to a new practice, for 2 more weeks and it got bad very quickly. She would get off the school bus aggitated and ready for a fight. She would cry, scream, annoy, throw furniture, threaten, destroy, and do her best to get everyone involved in her world of instability. It scared the baby so much to see and hear her sister act out-of-control. Whenever she would switch into that mode, my husband would take the baby and go to the basement while I tried to keep everyone safe.

'A' totally lost control and was attacking my husband while he held a terrified and screaming toddler, when I made the difficult and quick decision to call the police. My husband hated that I had to call them because they always sent several cars and he feared what the neighbors thought was goin on in our home. Of course, when 'A' saw them coming, she broke down and felt horrible for what happened. They took her by ambulance to the hospital where they transferred her to a treatment center/hospital for mentally ill.

The intake seemed to take forever and all 'A' wanted to do was eat and go to sleep. I was very hesitant about leaving her there because it seemed that while I was there, all the nurses did was sit behind a glass barrier at a desk. I knew that she couldn't come home and that everyone was at least safe for the night. I kissed her goodnight, told her that I loved her, and left my baby in the care of strangers once again.

I called her father and gave him the details of the center. I was once again, traumatized, angry and felt so guilty for what happened. Her father and I agreed to take turns visiting her and when I got there...he came to me with tears in his eyes and asked me to have her discharged to go home with him. He was concerned about what was going on in the center. I explained to him that it was a place for mentally ill children like ours and that some were even psychotic.

'A' was as pleasant and agreeable as she could be which was somewhat frustrating for me. Once again, I had to prove and explain to the doctors that what they saw there was not the child that I sometimes had at home. After seeing how the facility was run and some of the children there, I went to my car, made some phone calls to her dad,the first hospital that she was at and the insurance company to see if a bed was available so that she could be transferred. I spoke to a supervisor who said that he'd try to get her transferred and everything seemed to be going fine when I got a call back from the supervisor and he told me that they were discharging her. I didn't even have shoes for her to come home in and ran to pick some up.

I went back in the building to talk to the supervisor and he told me that the psychiatrist spoke to 'A' and determined that she wasn't bipolar. I felt so helpless...tears began to fall from my eyes. I questioned him as to how he could make that determination without getting a history from me and talking to her for 10 minutes. I explained that 'A' wasn't psychotic like many of their patients but definately too dangerous and unstable to come home then. They apologized and ran through their discharge script and let us go.

As soon as we got in the car, 'A' began insisting that I take her to McDonalds and the ride home became a fit of screaming, crying, kicking and threatening. I told her that if she didn't stop...I would have no choice but to take her back to the hospital. As we approached the exit off the freeway, she continued and I passed the exit and headed directly to the hospital where she originally was admitted. In hindsight, I should have pulled the car over and called for an ambulance to take her because things got out-of-hand. She opened the car door and hit me off and on during the whole drive. I called the ER and let them know that we were on our way and they gave me instructions on what to do when we arrived.

Hospital Visit...

I still drop tears now when I think about having to leave my child in the hospital. When she finally arrived, I was put in a room and asked a battery of questions and told us the rules of the unit, while they prepared 'A'. They brought her in with her oversized hospital scrubs on and teddy bear that they gave her. I kissed her, told her I loved her and said goodbye and shortly after, I was escorted out. This was so difficult because I'm the cautious parent that is particular about where she goes and who she stays with and always watching her like a hawk to make sure she is safe.

I don't recall ever being so full of emotion and crying so much in my life. I was emotionally and physically drained...I was angry, I was fearful, I was in shock, I was hurting for my family and for my little girl.

She was always so happy to see me and strangely was alright being in the hospital during her first stay. My family met me at the hospital--my 95 yr old grandma, sister, neice and nephews came for the adventure but the children weren't permitted in the unit. My sister watched the baby while my mother and I visited with 'A' We talked a little, she changed into the clothes I brought from home, she told us about the activities, and as I was combing her hair, the psychiatrist called me in.

The psychiatrist told me that he wanted to start her on a stimulant for ADHD. I was VERY hesitant about them giving her a stimulant because of her reaction to them in the past. My mother reminded me that we were in a hospital and to try it while she was being monitored in that setting. We were then called into a meeting with the Social Worker who got 'A's' history and appeared to be empathetic. She often repeated how complicated and difficult 'A's' case was. I felt the need to meet with the social worker first w/o 'A's' father being there because of his tendency to overspeak and monopolize the conversation but asked her to meet with him another time. 'A' was brought in to discuss what happened with us and very openly spoke of the proper way to handle herself and how she was going to do different.

She stayed 3 nights in the hospital and it pained me to leave her every time. I'll never forget her waving to her baby sister through the glass of the unit and her sister being so excited to see her. 'A' really seemed to like the structure of the hospital and the nurses noticed this too so they made things a little more difficult for her before she left.

Before she left, 'A's' father and I met with the psychiatrist. He told us that he didn't believe that she was bipolar and that the two parent's home needed to be run similar. His observation was that she didn't display psychotic behavior in the hospital and she was very agreeable. I respectfully told him that I had no doubt that she was bipolar and it wasn't uncommon for bipolar children to be able to "hold it together" in certain situations. Things were going her way up until a few hours before she was discharged. I also expressed my concern that she was manic due to the stimulant and that I hoped she would not be returning to the hospital. How I wish that I was wrong!

What brought us here...

I don't really know where to begin this entry because I still can't tell you how we got to this point. 'A' began the school yr and shortly after, began having more difficulty at home. Her therapist that she had seen for a year, moved out of town and shortly after, her mood swings became more severe. She came home one day very aggitated and it quickly escalated into her hanging herself off a 2nd story ledge. Did I really think she was going to hurt herself? Not really... but I AM aware that mistakes happen when people become unstable or unhappy. 'A's father encouraged me to call the police in hopes of getting her calmed down. A female officer, who was very nice and understanding, came out to speak to 'A' and de-escalate. Luckly, 'A' still fears the police and the sight of the officer seemed to jolt her back into reality. She encourged us to call back if we had any other problems.

I discussed the situation with her father and we decided it would be best for her to stay with him for a period of time until I found additional help for her and it gave us a little respite. She ended up staying with him for 3 weeks and this was the first time that her dad participated in her psychiatric appointments.

She came home after that time and believed that she could "behave" and "do better" yet shortly after she returned...the behavior started back up. The door slamming, screaming, threatening, sneaking of food, undermining rules, opposition, defiance, disrespect, refusal to acknowledging boundaries, lying, and sneaking came to a head. I could not tell her "no" without there being a huge meltdown or rage. I tried everything that I knew to give her consequences. At one point, the tv, computer, phone, and outside priviledges were all taken away and it seemed to have no effect on her behavior.

I tried taking 'A' to another therapist who met with me, her father and 'A'...only to make the statement, "wow, she's really bipolar...what do you want me to do with her?" Needless to say, that ended that with the crazy therapist. I wonder if I would keep my job as a special education teacher if I told a parent, "wow, your kid is really retarded...I don't think I can educate him/her."

What made things worse was, her father got into the mode of always wanting to please her, trying to make up for the first couple years of her life that he wasn't around and 'A' learned to manipulate her father to get her way with him. Her father, being a musician, always had 'A' on the go, moving from one student's house to another or she would be at his home with a sitter while he worked. We were in the beginning phase of working towards both his home and my home becoming more similar and structured before her last therapist moved away. 'A' seemed to have more and more difficulty moving from the unstructured and limitless boundaried environment of her dad's house to the structure and boundaries of my home.

One afternoon she came home aggitated but it had a much stronger intensity. She very quickly escalated into threatening to kill herself and meaning it at the time. She hung herself over the ledge again but moved to her bedroom screaming, "I want to die", where I found her on her way out of her 2nd floor window. I was home alone with the baby and had no clue what to do but immediately called 911 and they sent officers and an ambulance. When they came, she saw the police and broke-down crying. I asked that they bring her to the hospital for evaluation. She was transferred and admitted to the psych unit. 5 months later and it still seems so surreal. My 9 year old baby threatened to kill herself and was admitted to the psychiatric unit of a hospital. Our lives were totally turned upside down.

A new beginning

When 'A' was 7, I got married and pregnant a month after. That summer, we tried weaning her off of meds and putting her on a supplement that many found success with. I wasn't finding great success but I really wanted to. It was a loooong summer. My morning sickness set in and I spent a lot of time in bed or in the bathroom. 'A' was even more miserable...angry, running away daily, on edge, threatening other children and almost climbing walls.

I realized that she wouldn't be able to function in school if I didn't take her back to the psychiatrist. She saw a new one that I really liked and who seemed to really know her schtuff. She was a mother, empathetic and actually listened to us. She saw 'A' for 5 mins. and told me that she'll end up getting kicked out of school if she didn't get on a good medication.

I also took her to an alternative medicine doctor in hopes that he'd fill in the missing pieces. They did a series of tests that are not done in "normal" doctors offices and even did an expensive neurotransmitters test. They found some deficiencies, one important and significant one was seratonin which is responsible for mood--mainly depression. They also found that she is high in aluminum. I wasn't too surprised by this because shots are being preseved with almuminum now. Research has found that aluminum is responsible for many brain disorders and malfunctions and although I used a delayed schedule, she was fully immunized.

We started her on meds and saw an improvement but things weren't "perfect"...but what IS perfect? I would love to go back now to where we were then!!!

Towards the end of my pregnancy, we strangely started house shopping because we had a buyer of our house-'A's' dad. Odd but we jumped on it because of this terrible housing market. So, 4 days before my due date, we moved. 'A' transitioned very well into her new home, new school, and position of big sister. I had to be induced when I was week overdue and 'A' became a big sister to a 9lb 2oz baby sister. She was VERY happy and a great help!

'A's' academics improved greatly in the new school, she quickly made new friends, and things seemed to be going very well for her.

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