
Edge of the Abyss (2012) - atondwal
http://www.smh.com.au/lifestyle/edge-of-the-abyss-20120819-24h4r
======
andrewguenther
Maybe note that this article is from 2012?

Since then, Bodhi (the brother) has been diagnosed autistic and they suspect
he is also a paranoid schizophrenic, but he just doesn't verbalize like Jani
does. Michael (the dad) had an affair and the parents are now divorced.

It is a truly tragic story. There is a well-written post from Michael which I
can't seem to find where he gives advice to other parents raising children
with mental problems.

(I found the quote, but not the whole piece)

> All I can tell you now is you have to decide what is more important to you
> In this life, with mentally ill children, something is going to have to go.
> You have decide what that is. It our case, it was our marriage. May Jani and
> Bodhi forgive me. I couldn’t do it all.

~~~
fatlasp
I stumbled across a post ending in your quote. Looks like somebody started a
foundation which turned up on a search of Michael Schofield's name; you might
be thinking of this post:
[http://janifoundation.org/blog/](http://janifoundation.org/blog/)

~~~
cfcef
[http://janifoundation.org/the-fallen/](http://janifoundation.org/the-fallen/)

~~~
hitekker
This is indeed where the quote of the parent parent comment can be found.

------
kough
It's stories like this that make me wish as hard as I do for better pre-birth
screening for mental disorders, including autism, and continued support of
abortion. It's an unbearable burden - to the parents, society, but most of all
to the children themselves, who are utterly blameless and must suffer the rest
of their lives as a result. I try to debate rationally and understand that
other people have their own opinions but I feel sick arguing with people about
this. My family has had it easier than many, certainly nowhere as bad as the
family in this story, and I love my brother, but if we could choose between
him existing and him not existing the latter is clearly better for all
involved, including him.

~~~
abortoTheClown
But if we aborted every deviation from the norm, we'd probably slip into
monoculture as a species, and risk falling prey to a mass extinction event,
beyond our understanding.

Somehow, the cold statistics of DNA mutation would leave us behind, and we'd
become creatures with no means of adapting, until one vast catastrophe forces
the issue.

What might feel practical in the moment, for one, might be terrible for the
collective.

~~~
gherkin0
> But if we aborted every deviation from the norm, we'd probably slip into
> monoculture as a species, and risk falling prey to a mass extinction event,
> beyond our understanding.

But he wasn't talking about that. A lot (most?) people with serious disorders
will not have children, and from an evolutionary perspective that's
practically the same as if they died young. There's already selection against
those traits.

~~~
inopinatus
Human evolution is more complex than the survival of an individual, since many
of our adaptations are transmitted as ideas not genes.

Following that line of thinking leads to notions about the presence &
importance of second-order interactions (especially the impact of ideas on the
survivability of a group); these make it hard to reject the hypothesis:
_production of outlier individuals is essential to our species_.

Sadly outliers occur on all sides of the distribution, including the unhappy
ones.

------
Mithaldu
There's a song that was made with the intent to bring this kind of issue
closer to people, and it's approved by her parents:

[https://www.youtube.com/watch?v=7Q4ZR_Bye_4](https://www.youtube.com/watch?v=7Q4ZR_Bye_4)

------
whitegrape
Title needs (2012), I'd love to read a more recent followup if anyone knows
about one. My brother didn't show signs of his schizophrenia until his teens
(it may have been triggered/hastened by drug use, I haven't kept up with the
literature around that theory), it took over 10 years for him to get to a
stable place with my mom's great efforts. The end of the article is
encouraging, modern medications and ratios _have_ gotten better and it really
helps when the person is a minor. Keep the love and support going, and don't
discount her not being a good sister in the end.

"There is no cure for schizophrenia." Yet.

~~~
ImTalking
I know nothing of your circumstances, but many schizophrenics gravitate to
drugs to alleviate their symptoms. I very much like your sentence. "Keep the
love and support going, and don't discount her not being a good sister in the
end."

------
jsprogrammer
If I read the article right, it sounds like Jani started immediately improving
once people began talking and interacting with her.

I wonder how things might have been different if that treatment would have
been tried much earlier on.

------
samstave
Oh god I recall this article.

I have three small kids. I am blessed that they are 100% healthy.

I can't imagine how some people handle certain challenges.

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macawfish
It's uncanny to me that Jani hallucinates cats and rats... Toxoplasa Gondii
evolved in cats and rats, and is linked to early-onset schizophrenia
([http://www.ncbi.nlm.nih.gov/pubmed/16920078](http://www.ncbi.nlm.nih.gov/pubmed/16920078)).
Makes me wonder...

T. Gondii is known to cause infected rats to become attracted to the smell of
cat urine.

------
lintiness
i have a 3 yo daughter and a 1.5 yo son. this story is terrifying.

~~~
pmarsh
I find it amazing at the untold strength in parents like these. Just ordinary
folks who somehow find a way to keep on trying and pushing and doing their
best when faced with unimaginable challenges.

They fall and get up and keep going.

Makes so many other problems many of us have to face really seem more like
"problems".

~~~
Ygg2
Sadly, story doesn't end here. Now the brother is autistic, possibly
schizophrenic and the parents are divorced.

~~~
pmarsh
Ugh you're right. It seems they romanticized it in their own heads as well.
And in the end they're just humans.

The dad wrote a post about it all :
[http://janifoundation.org/blog/](http://janifoundation.org/blog/)

Wish them all the best either way, it cannot be an easy journey.

------
m0llusk
What interests me most about this is that even now we are so lacking in our
understanding of the function and dysfunction of the human mind that there are
not even good words, robust descriptions, or any scientific metrics or
diagnostics for what is going on. Words like engagement and violence get
thrown around without quantification and a parade of categories are fitted and
later abandoned much like Jani's imaginary friends. It is important for us to
understand what the mind is and how it is evoked from brain function, but now
we are mostly helpless.

