autism, organizing, relocation

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–

(2020 cut out a TON of coding that now looks like Gibberish, how coding has changed to view web sites!!)

—– Original Message —–
From: <severeautism@yahoogroups.com>
To:
<severeautism@yahoogroups.com>
Sent:
Saturday, October 15, 2005 2:16 PM
Subject: [severeautism] Digest Number
147

For deep-end families, lack of hope can
kill

Peter Bronson
Enquirer staff writer

HELP IS AVAILABLE IN OHIO
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: “deep-end 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 illness.

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 hurt.

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 abandonment.”

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 likely.

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 listen.

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.

They 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 (513) 768-8301.

————————————————————————–

Copyright 1995-2005. The Cincinnati Enquirer, a Gannett Co.
Inc. newspaper.
Use of this site signifies agreement to terms of service
updated 12/19/2002.

————————————————————————

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

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

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 brother.

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.

In 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.

THEN HOPEFULLY FRIDAY INTO THE HOUSE WITH KEYS??????

quiet over — one hand typing again…..

 

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