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Reading Challenge Wrap-up: Mental Illness Advocacy Reading Challenge 2012

December 24, 2012 2 comments

mia2012badgeAs you all know, the one reading challenge I host is the Mental Illlness Advocacy (MIA) Reading Challenge.  Since we’re into the last week of the year, I’d like to post the 2012 wrap-up.

This year, I read 8 books that count for the challenge, successfully achieving the Aware level.

The books I read and reviewed for the challenge, along with what mental illness they covered, in 2012 were:

  1. The Sparrow by Mary Doria Russell
    PTSD
    4 out of 5 stars
  2. The Story of Beautiful Girl by Rachel Simon
    Mental Retardation
    4 out of 5 stars
  3. Barefoot Season by Susan Mallery
    PTSD
    4 out of 5 stars
  4. Abject Relations: Everyday Worlds of Anorexia by Megan Warin
    Anorexia
    4 out of 5 stars
  5. A Long Way Down by Nick Hornby
    Depression
    4 out of 5 stars
  6. Haunted by Glen Cadigan
    PTSD
    3 out of 5 stars
  7. January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield
    Schizophrenia
    4 out of 5 stars
  8. Germline by T. C. McCarthy
    Addictive Disorders
    4 out of 5 stars

The books I read covered genres from scifi to thriller to memoir to academic nonfiction to historic fiction.  I’m also a bit surprised to note in retrospect that all but one of these books received four stars from me.  Clearly the books I chose to read for the challenge were almost entirely a good match for me.  It’s no surprise to me that I enjoy running this challenge so much then. :-)

The most unique book for the challenge was The Sparrow.  The scifi plot of first contact with aliens was a very unique wrapping for a book dealing so strongly with mental illness.  Most challenging was Abject Relations: Everyday Worlds of Anorexia, which was my first foray into university-level Anthropology.  Something I’d like to see more of is more memoirs by parents of children with a mental illness, like January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her.  That was an interesting, new perspective for me.  I think I’d also like to read more schizophrenia books next year, as well as books that challenge the gender norms perceived of in certain mental illnesses, such as the idea that eating disorders are female or that alcoholism is male.

If you participated in the challenge this year, please feel free to either comment with your list of reads or a link to a wrap-up post.  I’d love to see what we all successfully read this year!

And if the MIA Reading Challenge sounds like a good match for you, head on over to the challenge’s main page to sign up for the 2013 iteration!

Book Review: January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield

August 8, 2012 2 comments

Blonde girl running with the words "January First" imposed over her.Summary:
Michael and Susan thought their daughter, January’s, high energy levels and vivid imagination were the result of her high IQ, but when she turned five her imaginary friends started to tell her to do bad things like hit her baby brother or throw herself out of windows.  Soon it became apparent that her imaginary friends were actually hallucinations.  What followed was a harrowing struggle to get their daughter diagnosed and treated.

Review:
It’s rare to see a memoir by a father.  There are a ton of memoirs by mothers but not a lot by fathers, particularly not by fathers of daughters.  Put this together with the fact that Jani (her parents’ nickname for her) has childhood-onset schizophrenia, and you have one unique book.

This is an excellently told memoir.  It opens with Michael speaking about having his daughter’s diagnosis now and struggling with all the barriers toward a normal life presented not just by her illness but by the world we live in.  He talks about how some people argue that it’s impossible to diagnose a child with a mental illness, let alone schizophrenia, and of course some people even suggest that Jani is possessed by demons.  He gets the denial.  It’s scary to see a child consumed by an illness that is completely arbitrary in choosing its victims.  But he says,

Denial is not going to help Jani or any of the other mentally ill and schizophrenic children I have come to know. What they need is acceptance. What they need is for us to be telling them “your illness does not define you.” We cannot go inside their minds and “fix” them. But we can fix the world so they can live in it.  (location 90)

That speaks very strongly toward the whole reason I created the Mental Illness Advocacy Reading Challenge, and I knew then that this was going to be not just a unique read, but a challenging and good one.

After the introduction, Michael tells the story in a linear fashion.  He does a good job remembering how he felt in the early days.  His immense pride at his daughter’s high IQ and creative mind coupled with a determination to help her succeed and be herself.  It’s fascinating to see, as an outsider, how early there were warning signs that something was not quite right with Jani but that Michael and Susan (her mother) attributed to a positive cause.  I think that’s typical of parents and indeed of anyone who loves someone.  They were looking for the best.  Believing in the best for their daughter.  They may be that moderately annoying couple on the play date who just insist their daughter with inappropriate behavior is gifted, but seeing it from Michael’s perspective makes that make sense.  Most people (with the exception of parents with Munchausen by Proxy Syndrome) don’t want to believe that their child is sick.  So of course you exhaust every other option first.

This of course makes Jani’s move toward violent behavior at the age of five that much more heart-breaking to read.  I’ve heard and read stories and documentaries of how difficult it is for parents of young adults who become schizophrenic but at least they are adults.  To have this happening to your five year old is completely terrifying.  How do you control a child for whom no punishments seem to work?  Who is more concerned with appeasing her hallucinations than with obeying her parents?

I certainly don’t agree with all the parenting choices the Schofields made in the first five years of her life (and for the record, neither do all of the psychiatrists), but none of their choices would create schizophrenia.  Being overly lenient with your kids won’t make them hallucinate and become this violent at the age of five.  This is one of those occasions where you don’t always agree with the choices the memoirist made, but you’re also not right in the heat of the battle.  It’s far easier to say, “oh, you should have done this,” when it’s not your child who’s being lost to a mental illness right before your eyes.

That’s the thing about this memoir.  Michael is so obviously completely honest.  He tells things that happened that don’t present him in the best light.  He is completely forthcoming in his own shortcomings, but he reiterates over and over how much he loves his daughter and wants to keep his family together.  This combination does for this memoir what a lot of memoirs don’t have: it lends a complete sense of validity to the story as a whole.  Michael is so honest about the emotional struggle of it all that even though you may not like him as a person, you respect him as a father.

This level of honesty combined with his writing ability make this memoir a strong call.  A call to parents of children who are other-abled (whether mentally or physically) that they are not alone.  It’s also a call to the rest of us who are not one of these parents to take a moment to think how difficult it must be and go easier on the parents and the child.  I know I for one might think the next time I see a kid throwing an epic tantrum, “Maybe that child has an illness” instead of “Sheesh, do a better job, parents.”

Overall, this is a well-written memoir presenting the unique perspective of a father caring for a daughter with a mental illness.  It also provides one of the few accounts of childhood-onset schizophrenia.  Highly recommended to parents with special needs children, as well as to anyone who enjoys memoirs and the different perspectives reading them can bring.

4 out of 5 stars

Source: Netgalley

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Counts For:
Mental Illness Advocacy Reading Challenge

The Neuroscience of Autism and Learning Disabilities (Science Librarian Boot Camp 2012 Tufts University)

June 19, 2012 Leave a comment

Instead of inundating you with my notes from yet another professional development session, I decided to select out my favorite part to share with you all.  Out of everything I did in the Science Librarian Boot Camp, I enjoyed the Neuroscience presentations the most.  So, here they are. Enjoy!

“Genetics of Neurodevelopmental Disorders,” Dr. Anthony Moncao, Tufts University

  • Genetics studies Genes. Neurodevelopment studies Proteins and Regulatory DNA. Imagining studies the Brain.  Psychiatry studies Behavior.
  • Genes aren’t determinative.  They interact with the environment.
  • There is very strong evidence that genetic factors increase risk.
  • Susceptibility genes–genes that with environmental factors increase risk for these diseases
  • How do we find susceptibility genes?
  • Identify a chromosomal translocator and neurodevelopmental disorder.
  • Copy number variants –> Deletion or addition/duplication of material.  We all have these in some variation but in some instances they hit important areas.  They are inherited or de novo (neither parent had it).
  • What is “strict” Autism?
  • Impairment in: verbal and nonverbal communication, reciprocal social interaction, repetitive and stereotyped patterns of interest (don’t ilke change)
  • Onset before 3 years
  • male to female ratio: 4 to 1
  • Autism Spectrum includes Asperger Syndrome, PDD-NOS (removed from DSM5)
  • Autism Spectrum has a combined incidence of about 1%
  • 5% of Autism Spectrum disorders are comorbid with Fragile X, Tuberous Sclerosis, Down’s, muscular dystrophy, and other Mandelian disorders.
  • What are the genetic factors in Autism?
  • heritability is about 85 to 92%
  • rate among siblings is 3 to 9%
  • It is one of the most strongly genetic of childhood-onset psychiatric disorders.
  • No evidence yet for genes with variants in all forms of Autism.
  • Hardly any two autistic kids are gonna be the same (genetically).
  • Many of these genes are important in synapses.
  • Cadherin 8 (CDH8) is probably the culprit in these microdeletions.
  • Variable expressivity –> a deleted gene can cause multiple different outcomes (autsim, learning disorder, etc…) so evidence is strong environment is a factor
  • Future prospects include: Cohorts, sequencing, translation, use of rare CNVs diagnostically, genetic counseling, early intervention for sibs, CNVs may help us predict the outcome.
  • Projected future difficulties include: CNVs are common, so we have to be sure the one we’re calling Autism really is.  Ethical issues of testing children before they have any symptoms.
  • Autism has very complex etiology.
  • Collaboration is important to make progress.
  • Specific Language Impairment.
  • Just as frequent as dyslexia/autism.
  • It is a difficulty acquiring expressive and/or receptive language despite adequate intelligence and no physical problems (ie deafness).  Problems in producing and comprehending speech, problems reading, normal nonverbal IQs.
  • It has an almost 100% heritability.
  • Inheritance is simple but complex phenotype.
  • The damaged gene –> FOXP2
  • A transcription factor.
  • Important in how the rest of the gene is regulated.  Kind of like a master switch.
  • Not the gene for speech (found in nonverbal species but important in vocalizations.  Mice won’t squeak properly.  Songbirds can’t learn songs if it is damaged.)
  • FOXP2 inhibits CNTNAP2 from being expressed (Sitting on it and not letting it make RNA).
  • Where is FOXP2 expressed in the brain? In the basal ganglia, phallus, cerebellum (motor centers).
  • Chimps are more similar to mice than humans in this gene.
  • FOXP2 is a regulatory gene.  Its downstream targets offer entrypoints into neural pathways involved in speech and language.
  • Developmental Dyslexia.
  • It is a diagnosis of exclusion.
  • 5% of schoolchildren have it.
  • Males are 3 to 4 times more effected than females.
  • Gene variant is two times as frequent in dyslexics as in controls.
  • Variants in KIAA0319 repress the expression of the gene.
  • These variants increase risk in reading problems in the general population.
  • May inhibit migration of neurons to the right are of the cortex.
  • ectopia–small bundles of neurons in the wrong area of the cortex
  • 4 dyslexia susceptibility genes have been found so far.
  • All 4 play a role in neuronal migration and/or axonal growth.
  • DNA is not determinative.  There are many other factors involved.

“Neuroimaging of Children’s Brains,” Dr. Jean Frazier, UMass Med

  • Goal: To explore how neuroimaging techniques provide insight into potential biomarkers for childhood onset neuropsychiatric disorders.
  • Basic principles of brain development: structures start small, get big, then get small again
  • 8 to 14 is an important age range.
  • They exuberate then prune, and it is the pruning that is important.
  • The more complicated a process is the more potential it could go awry.
  • Pruning is guided by “use it or lose it.”
  • The exact timing varies by structure.
  • birth to 3–time of rapid intellectual, emotional, and physical growth of brain and brain wiring
  • by age 6–95% of brain development completed
  • 8 to 13–2nd major brain growth spurt
  • 13 to 20s–pruning to organizing, especially in frontal cortex.
  • We can measure things that require energy using: PET, SPECT, fMRI, EEG, MEG
  • What MRI can tell us: structure, metabolites, blood flow, connectivity
  • MRS–noninvasive, analytic method to measure chemicals within body parts
  • If we are going to fully appreciate what is going wrong in brains, we have to fully understand what is going right in brains.
  • Whereas gray matter gets pruned, white matter increases.
  • Less gray matter, brain becomes more efficient.
  • But what happens in atypical development?
  • More blood flow in amygdala of depressed and anxious.
  • amygdala–governs ability to modulate our affect
  • Bipolars have abnormal connectivity in brain, especially in areas dealing with affect regulation and attentional capacity.
  • Application to Autism?
  • Recommends “Localization of white matter volume increase in autism and developmental language disorder” in Annals of Neurology by Herbert et al
  • Children with autism have more white matter.
  • Tracks most severely affected in Autism are growing/changing just after birth.
  • Biomarkers are a distinct characteristic that is an indicator of a particular biological condition or process.
  • Maybe the genetic risk factors are indicators of the dysfunction not the disorder.
  • Both schizophrenia and autism symptom is social withdrawal.
  • 1 in 54 boys and 1 in 252 girls (1 in 88 children) have Autism Spectrum, according to study from 2008
  • Inhibition of GABA and excitation of Glutamate are associated with autism.
  • Tuberous make too little of a certain protein. Fragile X makes too much.
  • Glutamate levels are higher in Autism.
  • Biomarkers could be used as predictors for treatment response.

Book Review: Woman on the Edge of Time by Marge Piercy

February 23, 2010 6 comments

Abstract painting on a book cover.Summary:
Connie, a 30-something Chicana of the 1970s who has led a rough life, enjoys the time she spends in 2137 at Mattapoisett with Luciente.  She believes she is a catcher and Luciente a receiver, which allows her to time travel in her mind.  Luciente tells her there are two possible futures, and they need her and all the downtrodden to fight and not give up or the utopian future of Mattapoisett will be lost.  Connie’s family and friends, however, believe she is schizophrenic and in need of their help.  Who is right?

Review:
I almost gave up on this in the first chapter when we discover that Connie’s daughter has been taken away from her due to child abuse.  Connie blames everything bad in her life on other people–the police, social workers, white people, her brother, etc…  She takes no responsibility for anything.  I was concerned that Connie’s opinions were the author’s opinions as well–blame society for everything and take no individual responsibility.  I was wrong about that, though, and I am very glad I didn’t stop reading.

Marge Piercy’s writing is astounding.  She sets up a complex social situation and leaves it open-ended for the reader to decide who is right, what the problems really are, who is to blame, how things can be fixed.  Unlike most books regarding time travel or mental illness, it is not obvious that Connie is actually time traveling or that she is schizophrenic.  This fact makes this a book that actually makes you think and ponder big questions.

The future world of Mattapoisett is of course the reason this book is considered a classic of feminist literature.  In this society it has been decided that all of the bad dualities of have and have not originate from the original division of male and female, so they have done everything they can to make gender a moot point.  The pronouns he and she are not used, replaced with “per,” which is short for “person.”  Women no longer bear children, instead they are scientifically made in a “breeder,” and then assigned three people to mother it.  These people can be men or women; they are all called mother.  In the future of Mattapoisett, women are allowed to be strong; men to be gentle, and that is just the tip of the iceberg of the interesting, thought-provoking elements of Mattapoisett.

At first I was concerned that this book is anti-psychiatry, but really it is just pro-compassion.  The reader is forced to observe the world from multiple atypical perspectives that force a questioning of world view.  More importantly though it helps the reader to put herself into another person’s perspective, which is something that it is easy to forget to do.  To me the key scene in the book (which doesn’t give away any spoilers) is when two people in Mattapoisett dislike each other and are not getting along.  The township gets them together and holds a council attempting to help each person see the situation from the other’s perspective, as well as to see the good in the other person.

What I’ve said barely touches the surface of the wonderful elements of this book.  I absolutely loved it, and it is a book I will keep and re-read multiple times.  I highly recommend it to all.

5 out of 5 stars

Source: PaperBackSwap

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