Families in trouble

I did get lots of stuff done yesterday and DH helped me a lot. I sorted all the papers again in the living room and packed up more stuff. Sorted out several drawers in the bedroom and organized those. Threw out tons of stuff! And this morning I did some laundry and actually baked a cake. Not that I need to eat it — ha! — but I’m trying to use up all my boxed goods especially due to the danged moths we have that get into all of that stuff. I’m not taking ANY of them with me…. the boxed goods (and hopefully not the moths, either!)

Wanted to post about two autism related things–

—– Original Message —–
From: <severeautism@yahoogroups.com>
Saturday, October 15, 2005 2:16 PM
Subject: [severeautism] Digest Number

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   Date: Sat, 15 Oct 2005 10:24:35 -0400
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Emailing: article (2)

For deep-end families, lack of hope can

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      Sunday, October 9,
      For deep-end families, lack of hope can kill

      By Peter Bronson
      Enquirer staff

            The Ohio
Department of Mental Health says FAST help is now
available in all 88 Ohio
counties, to provide family evaluations for
emergency care and services.
Call the National Alliance for the Mentally Ill
FAST Program at (800)
686-2646, or contact your county mental health agency:
Hamilton: (513)
946-8600; Clermont: (513) 732-5400; Butler: (513) 887-5506
and (513)
860-9240; Warren: (513) 695-2311.


There's a name for the toughest cases in the mental health system:
kids.” It fits their families, too.

      Parents of children with
autism, bipolar disorder, schizophrenia,
severe retardation, or a witches’
brew of other syndromes and disorders can
barely tread water. They struggle
to keep their heads up, running out of
breath and patience as they watch
their families slowly drown.

      Many spend themselves into bankruptcy
and find out health care plans
that cover “normal” diseases and injuries
don’t cover bills to treat mental

      They miss work to
care for their children and lose their jobs.

      Neighbors complain.
Cash runs out. Their other children are
emotionally neglected as mom and dad
worry constantly that someone will get

      The future is a
bleak horizon of rough water and no life raft, far
from shore without rescue
or relief. Some mentally ill kids turn to drugs or
wind up in jail. Some
attack or abuse siblings, neighbors or parents. Most
are kept at home like a
dark secret, soaking up every spare second from
frantic, stressed-out,
sleepless parents who are beat down by debt,
depression, divorce and
disintegrating families.

      Jan Naylor of Springdale went under in the
deep end on Sept. 29, and
shot her 27-year-old autistic daughter, Sarah, to
death, then set her house
on fire and shot herself. Officially, it was a
murder-suicide. Unofficially,
they died of hopelessness. A single mother at
the end of her rope was so
bereft of hope she could not leave her daughter
behind alone.

      “I guess she finally decided this was the way to go,”
said Springdale
Police Lt. Mike Mathis. “Families have a lot of difficulty
finding the help
they need.”

      Several mental health providers
and advocates – local, county and
state – said the same thing. They
described parents with two mortgages and
three jobs; desperate moms and dads
who know the schools are not equipped to
care for their unmanageable
children, but have nowhere else to turn.

      “It becomes a dire
situation. They go through horrible times,” said
Susan Shelton, board member
on the National Alliance for the Mentally Ill
and the Junior League, which
supports mental health awareness.

      All of the families suffer. But
Shelton and others agreed that
middle-class families suffer most. They can’t
afford private care and can’t
qualify for Medicaid help. Some give up
custody of their child to the state,
just to get adequate care and save the
remains of their family.

      “The only way it happens is if they think
it’s the only avenue to save
the life of their child,” said Terre Garner of
the Ohio Federation for
Children’s Mental Health. “It’s devastating. The
child is already
emotionally unstable, and then there is emotional

      Ohio doesn’t know for sure how many families have
done that, said Dora
Sterling of the Ohio Department of Mental Health. But
state and county
mental health agencies are working to make it less

      The answers can be simple. Families need respite care, to
escape for a
few days or a weekend. They need help to care for a difficult
or violent
child. They need transportation and medications. They need
someone to

      A survey by Ohio State University found that
74 percent of children in
their sample were at risk of going into state
custody without such services.
Nearly half of the parents had lost a job or
significant income in the past
year; and many felt like the fragmented
system blamed them, failed to answer
questions and added to the stigma of
mental illness.

      More than $1.2 billion is spent on mental health by
federal, state and
local programs in Ohio, Sterling said. But the most
important part for
deep-end families may be a $4.2 million sliver called
FAST (Families and
System Team). It has the funding flexibility to keep
families together, so
children stay at home, not in more costly state
custody and foster care.
Ohio should expand FAST immediately.

Jane and Sarah Naylor’s heartbreaking headline fit the sad story the

“system” knows well. Jane was fired from jobs, in debt, in trouble with

neighbors because Sarah wandered and could be violent.

were alone, barely treading water. And then they went under.

      We can
do better to rescue deep-end kids and their sinking families.

E-mail pbronson@enquirer.com or call


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a man does not keep pace with his companions,
perhaps it is because he hears
a different drummer.
Let him step to the music he hears,
however measured
or far

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“I did not write the following, but
thought y’all might be interested in watching this episode of

Supernanny Teams With An Acclaimed Autism Expert To Help A
Child Who Is An Outsider In His Own Home On “Supernanny,” November 4,

Supernanny Jo Frost teams with world-renowned autism expert Dr. Lynn
Koegel to tackle the parenting issues faced by a family whose three-year-old son
is an outsider in his own home. This episode of “Supernanny” airs on Friday,
November 4 (8:00-9:00 p.m. ET) on the ABC Television Network.

Deirdre and
Trae Facente don’t know how to integrate their autistic son Tristin into their
daily life with their twins, Kayla and Marlana (4).

Tristin is completely
non-verbal, caught up in his own world of spinning, jumping, swinging and,
often, taking off his clothes. The only time he spends with his family is
sitting at the dinner table. The twins, who demand much of their stay-at-home
mom’s attention, can’t figure out how to play with their little

The parents are at a loss as to how to help Tristin come out of
his zone and join the family.

Enter Dr. Koegel and Supernanny. Together
they refine the classic Supernanny methods and teach all the Facentes Dr.
Koegel’s inclusion and communication techniques to help engage Tristin. For
example, when they introduce the new daily schedule to everyone, Dr. Koegel uses
a picture board with Tristin to help him understand in a concrete way.

just a week, silent Tristin goes from zero words to speaking hundreds of times
using over 20 new words. He is bursting with requests to play a favorite game,
be tickled or eat a treat. Step-by-step, Jo and Dr. Koegel help the parents keep
Tristin from his disruptive behaviors by including him in family chores and
activities. These efforts culminate in the boy helping his dad set the table, a
seemingly mundane task that is so miraculous for Tristin, it brings tears to
Trae’s eyes.

Lynn Kern Koegel, Ph.D is one of the world’s foremost
experts on the treatment of autism. She and her husband, Robert L. Koegel,
Ph.D., founded the renowned Koegel Autism Center at the Graduate School of
Education at the University of California, Santa Barbara. She co-wrote the
bestselling book on autism, Overcoming Autism: Finding the Answers, Strategies,
and Hope that can Transform a Child’s Life, which was recently released in
paperback, and also co-authored, with Robert Koegel, the new book, Pivotal
Response Treatments for Autism. “


Ahhh, it’s so nice things are quiet for a minute — shhhh shouldn’t have typed that.

So, have a busy week this week. Tomorrow won’t be too bad and I’m going to try and get a lot done at home.

Then Wed. is not bad. Thurs. is PROBABLY our closing (yippee!) and also my daughter’s dr. appointment. and my aide won’t be here at all that day so we’ll have to entertain Chris after school.


quiet over — one hand typing again…..

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