Two mothers, who did not know each other before but had strikingly similar stories are now firm friends and have formed a support group for other parents of children with bipolar disorder called Bipolar Kids South Africa. Here they share their stories on what it is like living with a bipolar child, the long and painful road to diagnosis and how they manage this incurable condition on a daily basis.
Diagnosing children with bipolar
Elisa and Lee have both been down the same difficult path to a diagnosis of early onset bipolar disorder in their daughters.
Elisa said it wasn’t long after *Little C was born that she realised something was different about her. “It took seven long years of knowing that something was not quite right, before she was diagnosed and even then took a videotape of her bizarre and unnatural behaviour to get someone to investigate further and establish that she suffered from early onset bipolar disorder,” she said.
Lee, who is not *Big C’s biological mother, said when she met her at age 11 it was ‘common knowledge’ that she was a spoilt brat and was ‘cheeky and disrespectful’. But she says the more she got to know her, the more she realised there was something more sinister to the situation.
“At first I went to see my family doctor and in truth I expected a diagnosis of severe ADHD or something similar. He met with us all and after a while he told us he suspected she might have early onset bipolar disorder and this was later confirmed by a specialist psychiatrist.”
Bedtime a nightmare for the bipolar child
Both Elisa and Lee say night time is the most traumatic time of day for both children.
Elisa said, “When she was only a few months old Little C would hit herself on the head so that she could physically fight off sleep. She had dreadful night terrors, sleep walking and waking up in the middle of the night screaming. As she got older she complained that she could see dark objects fly across the ceiling and told me that ‘the voices’ were telling her what to do.”
Lee added that Big C would also try anything to resist going to bed too. “She told me about terrible nightmares of being eaten alive by sharks, where she could actually see them tearing her flesh apart and the blood and her flesh would be gushing out everywhere. She would not sleep alone in her room and would call me often to come and sleep with her. Most times I would just stay with her for the night and she would also wake up frequently just to make sure we were still there and had not left her.
Aggressive tantrums and obsessive behaviour
However there was much more to their strange behaviour than just resisting sleep, as Elisa recounts how Little C used to throw very long and aggressive tantrums from a very young age, and no amount of consoling her would calm her down.
“Separation anxiety is huge, and she could not be away from me for any length of time, even in the same house. She was also obsessed with certain things and at one stage, she became extremely frightened of tall dark haired men and at nursery school the teachers had to turn her chair away when the when fathers fetched their children.
“I also noticed that she had to have her own way with everything or she would have a violent tantrum, throwing things, bashing doors, hitting me and hurting herself - which was self-punishment for being badly behaved,” she said.
Lee said Big C also had problems at school and hated being told what to do.
“She showed her displeasure by ignoring us and was very rude to adults. It was almost as if this was an adult trapped in a young girl's body. She was unable to concentrate at school, unable to sit for any period of time to do homework, and if she was given a school project, the wheels would come off and she would cry and sob that she could not do it. She appeared to me to be an extremely anxious and nervous child, not to mention how quick it was for her to anger.
“She showed her anger by screaming and punching things, or even kicking the dogs. She had a self loathing at times and would insist that she was ugly and it was impossible for anyone to love her.”
Both girls suffered serious self esteem issues and frequently talked about how they wished they had never been born and wished they could ‘just die’.
The long road to diagnosis
Elisa and Lee spent years trailing from one doctor to another with their girls, visiting everyone from psychologists to homeopaths and kinesiologists to try and figure out what was wrong. Yet all they were met with was a common opinion that their parenting skills were to blame and even faced accusations of child abuse.
It was only after Elise managed to capture one of Little C’s full-rage episodes on video and showed this to a therapist that she was referred to a specialist psychiatrist who ran tests and finally diagnosed early onset childhood bipolar disorder.
“Neither of us had any idea what this meant, nor did we expect that it would be a disorder for which there is no cure. We were shocked and horrified when we researched the disorder and found out what the implications of bipolar disorder meant for the child as well as for ourselves. But it was a relief finding out that this bizarre behaviour had a name, and we were not the crazy ones,” said Lee.
Once they had come to terms with the diagnosis, the next big step was learning how to manage the disorder.
“We had to learn how the bipolar child reacts to situations and how they process information. We had to learn what triggered the stressors, and we had to learn to try and accept this. We also had to realise that if they have a late night, we pay dearly for it the next day, with children who are unable to function properly,” said Lee.
However, even after they had done their research into this disorder they were still met with much ignorance and confusion from others and say the bipolar child is grossly misunderstood and unaccepted.
“Because their illness is psychological and not visible to the naked eye, it is so much easier to see them as naughty brats who remain uncontrolled.”
Since diagnosis both mothers have come to believe that childhood onset bipolar is actually extremely common, and believe that many children are erroneously diagnosed as suffering from ADHD alone.
Advice for other parents
Given their suspicions that the condition may be more prevalent than statistics show, Lee and Elisa have formed a support group for other parents who suspect their child might also have the condition.
“The best advice we could possibly give to a parent is to follow their own instincts. If the child has been diagnosed and treated for ADHD and the behaviour does not improve and violence or aggression becomes more severe - continue seeking medical advice and intervention.
“A mother knows her child far better than any doctor could, so do not easily accept a diagnosis if you suspect that there is something more going on. We found it to be invaluable to have each other to speak to, so join a support group,” said Lee.
She added that it made a huge difference for both her and Elisa to have each other to lean on and to have someone else who understands what it’s like being the parent of a bipolar child and they urge other parents to get in contact with them if they suspect their child might also suffer from early onset childhood bipolar disorder.
* Names changed to protect the identity of the children.