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For many years, the prevailing view among both cognitive scientists and philosophers has been that the brain is sufficient for cognition, and that once we discover its secrets, we will be able to unravel the mysteries of the mind. Recently however, a growing number of thinkers have begun to challenge this prevailing view that mentality is a purely neural phenomenon.
Photo credit: Painting by Alice Fisher, a SOHP narrator.
By Caitlin Tyler-Richards
It’s been awhile, but the Oral History Review on OUPblog podcast is back! Today’s episode features OHR contributors Drs. Linda Crane and Tracy McDonough answering OHR Managing Editor Troy Reeves’s questions about the Schizophrenia Oral History Project and their article, “Living with Schizophrenia: Coping, Resilience, and Purpose,” which appears in the most recent Oral History Review. This interview sets the record for our shortest podcast, clocking in at 9 minutes, 30 seconds. But what it lack in quantity it makes up for in quality!
Professor Emeritus Lynda L. Crane, PhD, and Associate Professor Tracy A. McDonough, PhD, are in the Department of Psychology at the Mount St. Joseph University in Cincinnati, Ohio. Over the last several years, they have created an oral history project of life stories of persons with schizophrenia. Their website, Facebook page, and Twitter feed are all ways to learn more about and connect to their work.
The Oral History Review, published by the Oral History Association, is the U.S. journal of record for the theory and practice of oral history. Its primary mission is to explore the nature and significance of oral history and advance understanding of the field among scholars, educators, practitioners, and the general public. Follow them on Twitter at @oralhistreview, like them on Facebook, add them to your circles on Google Plus, follow them on Tumblr, listen to them on Soundcloud, or follow their latest OUPblog posts via email or RSS to preview, learn, connect, discover, and study oral history.
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Surely the time has finally come to put our heads together and focus on three seldom connected variables regarding mass murders in the United States: the lack of comprehensive psychiatric care for individuals with mental illness, poor public recognition of the red flags that an individual might harm others, and easy access to firearms.
How should we address the first problem? The fiscal problems this country has faced during the past decade, combined with skewed budget priorities, have lead to a significant reduction in public health care, in particular for mental illness. Insurance companies have limited the time providers have for mental health assessments, the duration and frequency of treatment, and the types of intervention they cover. These cutbacks have forced psychiatrists to do abbreviated and superficial psychiatric evaluations and to prescribe medications as stopgap treatment in lieu of more effective evidence-based therapies. Furthermore, the number of individuals without mental health coverage who also face unemployment, homelessness, or insufficient money to feed and clothe their families — all significant mental health stressors — is steadily rising.
How then can mental health professionals conduct the comprehensive, time consuming evaluations needed to determine if an individual might be dangerous towards others? Self-report questionnaires, another quick method professionals use to conduct psychiatric evaluations, are clearly not the answer. Few people with homicidal or suicidal thoughts acknowledge these “socially unacceptable” intentions or plans on paper. Expert clinical acumen is needed to carefully and sensitively help patients talk about these “taboo” topics and their triggers. A five-to-ten minute psychiatric appointment clearly doesn’t do the job!
The lack of comprehensive mental health care is most sorely evident for such conditions as schizophrenia, as well as psychosis associated with substance abuse, depression, bipolar disorder, neurological disorders, or medical illnesses. In these conditions individuals can be plagued by and act in response to hallucinations that include voices commanding them to kill or visions that incite their aggressive response. Delusions (rigid, pervasive, and unreasonable thoughts) that people threaten them can also cause an aggressive response. Mass murderers might act out their hallucinations and delusions, as in the attempted assassination of congresswoman Gabrielle Gifford and murder of five bystanders, and in the Columbine, Batman, and Virginia Tech massacres.
Lack of time often precludes pediatric professionals from seeing children without their parents and detecting early warning signs of homicidal or suicidal plans. Similarly, physicians might have time to talk to adolescents but not to their parents. As a result, they might miss hearing about red flags of possible aggression by the youth and/or his peers.
The Affordable Care Act (Obamacare) will provide health insurance for more people, but what about quality mental health care? Few mentally ill patients are able to fight for their sorely needed unmet mental health care needs. Due to the stigma of mental illness and the related financial and heavy emotional burden, their families seldom have the power and resources needed to lobby elected officials or use the Internet and other media to publicize their plight.
How can we recognize the red flags of a potential mass murderer? In addition to well-trained mental health professionals with expertise, clinical acumen, and sufficient time with their patients, there is a need to educate the public about severe mental illness. Parents, family members, teachers, community groups, and religious leaders all need instruction to recognize possible early signs of mental illness. This knowledge will help them understand the plight and suffering of individuals with severe mental illness. And, most importantly, this awareness can lead to early referral, treatment, and prevention of violence due to mental illness.
Prompt recognition and early treatment of these symptoms are essential because firearms are so easily obtained in the United States. To get a driver’s license, individuals complete a Driver’s Ed course, pass a knowledge test, take driving lessons, drive a car with an adult for a fixed period, and then take a driving test. The underlying assumption is that irresponsible driving can physically harm others, the driver, and property. For this reason, individuals with epilepsy who experienced a seizure within the past year are barred from driving. Shouldn’t the same principles apply to guns? Yet, individuals can obtain guns without prior psychiatric evaluations, and there are no laws and regulations to safeguard these weapons in homes to prevent children and individuals with severe mental illness from gaining access to them. Reports on accidents caused by children and suicide by adolescents with their parents’ guns are common. According to a Center for Disease Control study, 1.6 million homes have loaded and unlocked firearms (Okoro et al., 2005).
As a child psychiatrist and parent, I regard the Newtown horrific mass murder of elementary age children as a final wake up call so that we will never again ask, “How many more children have to die?” Nothing can justify this preventable tragedy to the parents and families of their murdered beloved ones. The time has come to halt the unrelentless chipping away of our mental health care services and quality of care for mental illness, to educate the community about severe mental illness, and to implement strict controls on access to firearms.
Rochelle Caplan, M.D. is UCLA Professor Emeritus of Psychiatry and past Director the UCLA Pediatric Neuropsychiatry Program. She is co-author of “How many more questions?” : Techniques for Clinical interviews of Young Medically Ill Children (Oxford University Press) and author of Manual for Parents of Children with Epilepsy (Epilepsy Foundation). She studies thinking and behavior in pediatric neurobehavioral disorders (schizophrenia, epilepsy, attention-deficit hyperactivity disorder, high functioning autism) and related brain structure and function; unmet mental health need in pediatric epilepsy; and pediatric non-epileptic seizures.
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It's World Mental Health Day today - so what better time to address the subject of mental health in children's and YA books? I'm going to focus on bipolar disorder, because it's a particular interest of mine. But much of what I say can be applied to depression and other mental health conditions.
First of all, let me announce that I'm a sufferer myself from chronic/recurrent depression. Although I've never been diagnosed as bipolar, I do have mood swings and have some idea, at least, of what the highs as well as the lows can be like (the highs in my case may possibly be the result of not getting the levels of medication right - who knows?)
I now believe that my depression started when I was in my teens, though I had no idea what to call it at the time. It was all put down to PMT, though I'm not sure that the term had been invented in the late sixties. The fact that I suffered from it at other times of the month - well, that's easily got around - there's always another period on the horizon somewhere!
Or perhaps it began even earlier, when I was five and my dad disappeared off to Singapore with the RAF and I was terrified for months afterwards that my mum would vanish too. I'm sure my parents did their best, but knowing me, a book would probably have helped, and there weren't books for kids about that sort of thing in those days.
Perhaps I became depressed when bullied at my new school at seven, when I was ostracised because of my 'posh accent'. The memory still brings tears to my eyes and the teachers didn't help.
My depressive episodes, never diagnosed or treated, recurred at intervals of a few years until eventually, in my late twenties and living in Edinburgh with two small children, I took myself off to the GP with stomachache and she had the sense to see that there was something more going on. I was prescribed anti-depressants (which I refused to take on that first occasion) and told to get a part-time job. The part-time job helped. But the depression came back after a couple of years. This time it was worse and I took the medication. I also had counselling and the combination of the two brought joy and colour into my life that I'd forgotten could exist. Just waking up in the morning feeling at peace with myself... free from the self-condemnation, guilt, shame, worry, and all those other horrible things depressed people suffer.
Since then, I've had further episodes, often but not always associated with times of difficulty and stress in my life. I still fear my depression and try to make sure I don't get too busy or stressed out - but it hits me from time to time. I'm adept these days at recognising the early warning symptoms. I have medication on hand and don't delay in visiting my GP. In fact my depression these days is like my bad back in some ways - I know that if I'm sensible I have less of a chance of setting it off - but there's always the possibility that something (or nothing) will trigger it. And I have to accept that I'll have down times when I can't do very much. I'm very lucky in one respect, though. I have never been too depressed to read. I have several favourite books I turn to when I feel bad. William Styron's memoir Darkness Visible is one of them - where the great American author describes his own experience of depression. I'm not sure why it helps me, but it does. Perhaps it's just the putting into words of some of my own dreadful thoughts. The 'I'm not the only one' feeling. Whatever it is, I am so grateful to William Styron for writing it.
Anyway - children's books. I decided a few days ago to compile a list of characters in fiction who have bipolar disorder. Of course, it's difficult to be sure, if you go back very far, because the condition wasn't sufficiently understood. I asked for suggestions from various friends, contacts and writers' groups, as well as trying to come up with some of my own. I was partly interested in which books came to people's minds - i.e. the ones that had made a lasting impression. Thanks to all who contributed, I now have a list - and for the purposes of this blog I will restrict it to novels for children and YA.
This is my list, in no particular order (further suggestions most welcome).
The Illustrated Mumby Jacqueline Wilson
A Note of Madnessby Tabitha Suzuma
A Voice in the Distance by Tabitha Suzuma
My Mum's from Planet Pluto by Gwyneth Rees.
Red Shift by Alan Garner
Boneland by Alan Garner (though I'm told this is not strictly a children's/YA book)
***Mental by Sherry Ashworth
Girl, Aloud by Emily Gale
*** Mental is actually about schizophrenia, I realise now I've read it, but I'm leaving it on the list as it's a very good book.
Remember, these are for children/YA and I've restricted the condition to bipolar (except for Sherry Ashworth's Mental - see above). And I certainly don't claim that the list is complete. Nor have I read them all (yet). I'm currently enjoying Gwyneth Rees's My Mum's from Planet Pluto, which I'd strongly recommend. But I can't help noticing how few titles there are...
It concerns me that there aren't more. I said earlier that it would have helped me, as a child, if I'd been able to read about someone like me. I'm pleased to say that books for children featuring other kinds of conditions and disabilities are growing in number (though we still need more). We need, in my opinion, both issue-tackling books and books that treat the condition as a background thing - not the focus of the book but something one of the characters just happens to have.
It's the same with mental health. We need children's/YA books that delve deep into the condition (in a way appropriate for the target age-group, of course). But we need characters in books who just happen to have bipolar disorder (or depression or schizophrenia, etc) too. We need books that treat these conditions with gentle humour - combined, of course, with respect. I can laugh at my depression, at least some of the time. Often humour is part of the way we come to terms with things. We need books with 'heroic' endings (character overcomes all the challenges) and ones that are more true to life, while always offering hope. And in order to get this variety - we need LOTS MORE BOOKS. Sorry to shout, but we do.
So come on, children's authors... and publishers. By the time World Mental Health Day comes round next year, let's see a lot more books for children, YA (and adults) on the subject of bipolar disorder and, more generally, on mental health.
I believe there's a role for many of us in helping to remove the stigma attached to mental health conditions that, almost unbelievably, is still present in our society today.
We all have minds, after all, just as we all have backs.
Happy reading
Ros
Note: My own contribution to the bipolar list has just come out. It's for adults and it's called Alexa's Song. You can see it on Amazon UK and download it for Amazon Kindle for £2.54.
Very interesting, thanks for that. Too easy to think of depression as a teens and adult problem, not for the under tens. Thanks for sharing your experience
Many thanks for having the courage to write about this.
I used to work in Child Mental Health, and we met children with severe mood swings we were quite certain would later be diagnosed with bipolar disorder, but there is so little research into this condition it was impossible to find an effective way to help them, which was tough for us and doubly terrible for them.
It's so important that mental health becomes a normal subject in children's literature - or these children can simply believe they are mad. And they are NOT!
Wonderful piece, Ros. One YA book that impressed me was by Crescent Dragonwagon (wonderful name!) called The Year It Rained about a girl recovering from a severe mental health episode (I'm afraid I couldn't tell you whether it was bipolar or not). A beautifully written book.
I've just shared your wonderful post with my friends at The Elephant in the Room (a facebook persona who is actually "handled" by staff at Mind, the mental health charity). Elefriends, as we are known, provide peer support at a time when external support seems to be harder and harder to access.
Thank you all for the lovely comments and book suggestions. I will make sure I check out your suggested books - more for my reading list :-) And thanks for the support - I'm so glad that many of us are thinking the same way.
I totally agree that the issue of emotional problems and mental health should be part and parcel of the books we are writing for young people - not flagged up as a major issue. In my book Illegal, I deal with trauma leading to mutism but I hope that with my character, Karl and the plot and characters in the book, this issue becomes part of the story and not the overwhelming tub-thumping issue. Very interesting post!!
A most helpful blog post, recommended to me by Catherine Butler on the Rutgers lit serve I belong to. A couple of Australian mental health picture books: "The Red Tree" by Shaun Tan - this is about the child having depression, really (the You Tube version is beautiful, and might also be useful...; "Big and Me" by David Miller (Ford Street) - here it is a little machine coping with the dangerous unpredictability of the big one, which distances it well for young children; and "Coming Home" by Sharon McGuinness (Wombat Books)- actually on bi-polar and about a father (most I can find are on mothers). Virginia Lowe Create a Kids' Book
A very useful blog post, Rosalie and as Virginia already mentioned, I have written a children's picture book called 'Coming Home' which has just been published to coincide with Mental Health Week. It is loosely based on our family as my husband suffered from severe depression as part of his bi polar II disorder. It is written from a child's point of view and I hope it starts a conversation in families where a parent is experiencing depression. You can find more info at www.mrsmacsbooks.weebly.com
Thanks for mentioning the William Styron book...I'm going to chase that up myself now!
Could your cat make you crazy? [And I'm not talking about our neighbor's cat who is adopted us and refused to leave our driveway.]
"Johns Hopkins University scientists trying to determine why people develop serious mental illness are focusing on an unlikely factor: a common parasite spread by cats. The researchers say the microbes, called Toxoplasma gondii, invade the human brain and appear to upset its chemistry — creating, in some people, the psychotic behaviors recognized as schizophrenia." Read more here.
It turns out that toxoplasma can only reproduce in the guts of cats. It also comes out with their feces. [Do not continue to read if you are squeamish.] And when rats eat cat poop, the toxo alters the rats' brain chemistry. They become aroused by the smell of cat urine - and start hanging out where cats pee. Which leads to them getting eaten - and the toxo ends up back where it wanted, in the cat's gut.
Could toxo also be changing the brain chemistry of people who inadvertently come into contact with cat feces?
And, in related news, Oregon is having some success helping people with schizophrenia early on. The Oregonian reports that "By attacking the illness early and aggressively, with tools ranging from psychiatry to job training, EASA programs hope to move people from that tragic path to a healthy, productive life." a href="http://www.oregonlive.com/health/index.ssf/2010/08/innovative_programs_in_oregon.html">Read more here</a>.
Robert Freedman, MD, is Professor and Chair of Psychiatry at the University of Colorado and the Editor-in-Chief of the American Journal of Psychiatry. His new book, The Madness Within Us: Schizophrenia as a Neuronal Process, is a discussion of these two aspects of the illness. Freedman outlines the emerging understanding of schizophrenia as a neurobiological illness. In the excerpt below we learn about the basic brain dysfunction in schizophrenia.
The earliest observers of how people with schizophrenia seemed to react to their environment noted a peculiarity in the ability of persons with schizophrenia to appear unaware of the environment and yet overly responsive to it. Eugen Bleuler first developed the concept of an attentional dysfunction in schizophrenia in his essay on attention in schizophrenia…
Rachel not only hears voices but she hears noises as well, noises that her family members also hear but have learned to ignore. She hears screaming all the time, and she sometimes wanders the neighborhood to find out who is screaming. When my colleague Merilyn Waldo suggested to her that it might be traffic, she told us that her mother had said the same thing. There is a busy corner near the front of her house, and there are always cars stopping and then accelerating away. My wife and I experienced the very same perceptual abnormality ourselves on the night we brought our first son home from the hospital. We put the baby to bed and tried to sleep ourselves, but I heard screaming. I checked on the baby, and he was asleep. Then my wife heard it too. We checked again. Then we listened at the door. The screaming must be coming from another apartment, and we wondered if we should call the police to alert them to child abuse, but we knew that no other couples with babies lived in the building. Finally, when the traffic on the highway in front of the building stopped at 2 a.m., we understood how two very anxious, hypervigilant new parents can misinterpret the world around them.
For Rachel, the problem is not a single stressful night. It is a lifelong problem, which she has struggled with since she was a teenager, long before the onset of her illness at 28. She could never concentrate at school. The least noise captured her attention. As she put it, “My mind has to be here, it has to be there, I can’t concentrate on anything.” Unlike a typical child with attention-deficit disorder (ADD), whose attention is rarely captured, her attention was captured by everything, from the traffic squeaking to the refrigerator cycling on and off, to the neighbor’s ongoing argument next door. As a result, she could concentrate on very little.
Paul, on the other hand, seems to be aloof in his environment. When he was first ill and worried about snakes, I wondered if their voices arose out of noises around him in the dormitory. He acknowledged that the noise of the dormitory was exquisitely painful, but he could not connect it to the snakes. Now he seems withdrawn. When I walk out to get him in the waiting room, he seems oblivious to the people around him. He has constructed a psychological shell around himself, a solution many patients use to shield themselves from their otherwise overwhelming environment.
The most dramatic experience of the phenomenon of seeming to ignore the environment is catatonia, a rarely seen syndrome in schizophrenia today. The patient gradually stops responding to environmental stimuli and then eventually stops moving altogether. In the most advanced cases, the person suddenly freezes. If he is moved passively, then he may retain the position into which he is moved, a symptom termed “waxy flexibility.” These patients can often be drawn back to awa
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Aura has a secret that is getting harder and harder to keep. Her mother is suffering from schizophrenia and has become Aura’s sole responsibility now that her father has remarried and started a new family. Aura must make sure her mother goes to job as an art teacher and tries to monitor her through the window. But her mother is slipping further and further away, into her own world of delusions, fear and suspicion. As if that isn’t complicated enough, Aura has other personal issues. Her best friend just had a baby and can’t be as supportive as she once was. She has fallen for a skateboarding boy but can’t seem to put two words together around him. To top it all off, she has started to work for her grandmother, who doesn’t know who Aura is. As Aura tries to save and protect everyone around her, who is saving her?
This book is an honest and brutal portrayal of mental illness and the toll it takes upon the caregiver, in this case a teen who just wants to be normal. A large piece of the tension here is the relationship between mother and daughter, which teeters, tips and overturns. There is such a sense of betrayal and loss in their relationship, powerfully combined with dread and fear. Aura sees herself in her mother’s illness, certain that she too will eventually succumb to schizophrenia. She believes it is tied to the artistic talent that both she and her mother have, so she tries to turn her back on art.
Aura is a well-drawn protagonist trying to cope with an impossible situation and fighting to keep up the pretense that nothing is wrong. She is by turns in denial about the situation and drowning in it. She is a strong, amazing character who is resilient and refuses to stop fighting for her mother and herself.
Highly recommended, this book is dark, deep and haunting. It speaks from the heart about matters that are too often hidden or whispered about. Appropriate for ages 14-17.
Heaven (FAN) – God (also known as Allah, Elohim, Jehova, Bob, and Big Daddy), ruler of the universe and the creator of internationally best-selling products such as air, water, and Pizza Hut, was admitted into the Heavenly Home for the Mentally Insane today after He began denying His own existence.
When He spoke of His Father’s sudden, unexpected bout of schizophrenia, Jesus was obviously still in shock.
“We just never saw it coming,” He says while holding a weeping Mary, “He was fine one minute, you know? And then. . .bam! Like water to wine, He’s saying no God exists. We asked Him what He was talking about, but He just kept saying “God is dead” over and over. . .”
God’s angels, Gabriel and Michael among them, were unavailable for comment.
The Expert’s Opinion
When asked about God’s peculiar condition, psychoanalyst Sigmund Freud, who drove up from Hell to treat the Lord, gave us this advice:
“When a being goes without sex for as long as God has–approximately 15 billion years–it is understandable that certain mental functions eventually become impaired. Though it is my professional opinion that God, having no father or mother, is beginning to view Himself the same as His father–in other words, God has projected the nonexistence of His father to Himself.”
Despite this grim diagnosis, Freud believes there might be hope.
“There is a chance He’ll come out of it if His mind ever passes this roadblock, but as to when or even if that will happen, it is too early to say.”
The Earthly Consequences
God’s ailment has affected more than the spiritual plane. In the wake of His Holiness’s incarceration, rates of atheism have skyrocketed, particularly in once-theistic communities.
“God cannot lie,” says Reverend Jittlepop, “so if God says God doesn’t exist, then God doesn’t exist.”
The Westboro Baptist Church, now a branch of the Freedom From Religion Foundation, echoes this sentiment with religious fervor.
“God hates theists,” says pastor-turned-English professor Fred Phelps, “America will be punished for their tolerance of such abominations.”
But not everybody believes God is truly sick.
Doctor Dicky Dawson, British biologist and once an atheist, shares his doubts.
“It’s rubbish, there’s no evidence this supporting God’s claim that there is no God, therefore it is best to assume until evidence shows otherwise that God does, in fact, exist.”
Dr. Dicky, author of “The God Reality,” spearheads the movement of individuals known as the New Theists.
“Atheism is delusional bullocks, and it’s high time we let rationality run our lives.”
Stepping Up Schizophrenia Awareness
Jesus, with the help of the Legion of Angels, has founded an organisation dedicated to schizophrenia awareness and research, called The Holy Foundation for Schizophrenia Research and Awareness (THFSRA).
“We never thought it could happen to us,” says Jesus. “We were wrong. And we don’t want the same thing to happen to someone else.”
Very interesting, thanks for that. Too easy to think of depression as a teens and adult problem, not for the under tens. Thanks for sharing your experience
Many thanks for having the courage to write about this.
I used to work in Child Mental Health, and we met children with severe mood swings we were quite certain would later be diagnosed with bipolar disorder, but there is so little research into this condition it was impossible to find an effective way to help them, which was tough for us and doubly terrible for them.
It's so important that mental health becomes a normal subject in children's literature - or these children can simply believe they are mad. And they are NOT!
Wonderful piece, Ros. One YA book that impressed me was by Crescent Dragonwagon (wonderful name!) called The Year It Rained about a girl recovering from a severe mental health episode (I'm afraid I couldn't tell you whether it was bipolar or not). A beautifully written book.
Really important points raised in this post, Ros, as well as some useful book suggestions.
The Madolescents by Chrissie Glazebrook is a YA novel about a self-help group for teens with mental health issues, one of whom is bipolar.
I've just shared your wonderful post with my friends at The Elephant in the Room (a facebook persona who is actually "handled" by staff at Mind, the mental health charity).
Elefriends, as we are known, provide peer support at a time when external support seems to be harder and harder to access.
Thank you all for the lovely comments and book suggestions. I will make sure I check out your suggested books - more for my reading list :-) And thanks for the support - I'm so glad that many of us are thinking the same way.
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I totally agree that the issue of emotional problems and mental health should be part and parcel of the books we are writing for young people - not flagged up as a major issue. In my book Illegal, I deal with trauma leading to mutism but I hope that with my character, Karl and the plot and characters in the book, this issue becomes part of the story and not the overwhelming tub-thumping issue.
Very interesting post!!
Valuable topic of discussion, really.
A most helpful blog post, recommended to me by Catherine Butler on the Rutgers lit serve I belong to. A couple of Australian mental health picture books: "The Red Tree" by Shaun Tan - this is about the child having depression, really (the You Tube version is beautiful, and might also be useful...; "Big and Me" by David Miller (Ford Street) - here it is a little machine coping with the dangerous unpredictability of the big one, which distances it well for young children; and "Coming Home" by Sharon McGuinness (Wombat Books)- actually on bi-polar and about a father (most I can find are on mothers).
Virginia Lowe
Create a Kids' Book
A very useful blog post, Rosalie and as Virginia already mentioned, I have written a children's picture book called 'Coming Home' which has just been published to coincide with Mental Health Week. It is loosely based on our family as my husband suffered from severe depression as part of his bi polar II disorder. It is written from a child's point of view and I hope it starts a conversation in families where a parent is experiencing depression. You can find more info at www.mrsmacsbooks.weebly.com
Thanks for mentioning the William Styron book...I'm going to chase that up myself now!