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Sacramento, California http://www.feat.org
January 9, 2002
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·
Family Struggles With Autistic Child
·
Autistic Kids Get School Outside Philly
·
Unlocking Autism Plans Fundraisers in 18 Cities
Nationwide: Rally
·
FEAT Calendar of Events - Mid-Month Update
·
Reader’s Posts
Family Struggles With Autistic Child
Parents forced to make tough choices when deciding on
treatment
[By Shirley Hunter Moore.]
http://www.charlotte.com/neighbors/meck/mcover0106.htm
Chris and Christa Tickle knew things weren’t going well
with their son Pierson, even though family members said he’d grow out of his
odd behavior.
The child had never smiled at people or looked anyone in
the eye. He didn’t talk, and he didn’t play with toys the way most children do.
Pierson, now 3 years old, was diagnosed as being
autistic last April.
In an effort to do what is best for their son, the
couple have put
their son on a special diet and are paying for therapy many
parents can’t afford to treat their son.
“The stress is absolutely overwhelming,” Christa said in a
recent interview. “But what do you do? Do you go bankrupt? And do you do it for
your child?”
The Tickles have depleted their bank accounts, sold one car
and borrowed from family members to pay for treatment. They face an uncertain financial
future and are planning to sell their home.
Last winter, the Tickles were eagerly awaiting the birth
of their third child. They were living virtually debt-free, except for one car payment
and a mortgage on their home in Walden Ridge, a new subdivision in northwest
Charlotte near Huntersville.
Chris, 26, was doing well as a computer analyst. Christa,
27, stayed home and cared for the kids. But they worried about Pierson. He
rarely made eye contact and didn’t react to others’ voices or presence.
“At 15 months, he hardly made any eye contact at all,”
Christa said. “We would have to make
loud noises (for him to look at the camera), and sometimes he didn’t pay
attention to that. We thought he was deaf.”
When hearing tests turned up nothing, the Tickles searched
the Internet for other explanations.
Christa found information on autism, a complex
developmental problem that impairs a person’s ability to understand information
and communicate.
“As soon as I read about autism, I thought, ‘this is what
he has,’” she said.
It explained Pierson’s behavior and his fixation with
rolling and spinning toys or objects. After months of seeing specialists, a
Charlotte developmental psychologist gave the Tickles a definitive diagnosis.
Symptoms of autism can vary in severity. Genetic factors
often are involved and the exact cause is unknown, according to the Web site
for the Autism Society of North Carolina, a nonprofit advocacy group. The
condition is treatable, but early diagnosis and intervention are key.
The 1988 Dustin Hoffman movie “Rain Man” briefly brought
much of the nation’s focus to the condition, but his character was an autistic
savant - a person who displays an extraordinary ability - with extraordinary mathematical
talents.
Pierson hasn’t exhibited savant behavior, Christa
says.
The couple consulted other families in a close network
they’ve formed.
Then, they put their son on a strict diet they heard could
help. He eats no grain-based or dairy products, which means regular ice cream
is out. So are bread, cookies and cakes, unless they are made from rice
products.
The diet has helped some autistic children with digestive
problems, said David Laxton, a spokesman for the Autism Society. The Tickles
believe it has improved Pierson’s behavior. They also believe in the intense therapy,
despite the cost.
They’ve turned an upstairs bedroom into a classroom, where
they spend thousands of dollars for specially trained tutors who teach Pierson
things most kids know instinctively or pick up from others.
The tutors are in and out of the Tickle home constantly.
The therapy can last hours.
“Our house is basically open all the time,” Chris said. “Every
day something is going on. We’re really never relaxed, but when you see his progress,
it’s all worth it.”
The tutors have taught Pierson to look at people. They
used positive reinforcement, such as candy or a favorite toy.
They’ve taught Pierson to point.
“They had to turn his finger out and make him point,”
Christa said.
And they’ve taught him to follow one- and two-step
directions.
Now he interacts with his 3-year-old twin sister,
Elora, who is not
autistic. He also plays with his 41/2-month-old brother,
McKinley.
He also reacts to voices, says simple words and plays with
toys he’d never shown interest in.
All this has come with a price.
Though Chris has taken outside computer projects, the
debt continues
to mount.
To pay those hefty tabs, which sometimes reach about $3,000
a month, the couple have paid other bills late. They’ve sold one car and plan
to sell the other. They’ve also borrowed from family members.
“Every day we typically have people calling, wanting us to
fulfill our financial obligations,” Chris says.
They’ve gotten a home-equity loan to consolidate bills.
One key problem is the treatment they’ve chosen isn’t covered by Chris’
insurance.
The couple have appealed benefit denials, but so far
nothing has changed. Under the policy, you can’t exceed 20 therapy hours a
year. Autism is treated as a mental health issue, Chris says.
He and his wife are hoping legislation that state Rep.
Martha Alexander, D-Mecklenburg, is trying to get passed will allow people to receive
the same coverage for mental health and substance abuse as for medical illness.
That proposed legislation is still in subcommittee, Alexander said. “I haven’t
given up yet,” she said. “People need help.”
The cost of covering treatment like Pierson’s is an issue
for insurance companies, says Laxton, who says it’s not unusual for some families
to go to extraordinary measures. It’s difficult to decide what therapy is best,
he says.
He’s quick to point out that no one has ever been cured of
autism, but “there are instances where children have made marked improvement.”
And he says there are other services and treatments that may not be as costly.
The Tickles sought other options to pay for treatments.
They’ve tried to get Medicaid services, but the state budget problems have
delayed that, Christa said. The Charlotte-Mecklenburg school system doesn’t pay
for the therapy Pierson receives, and her working isn’t an option since she
cares for the other children.
So, the couple have decided to sell their home and move to
a smaller, less-expensive one. Also, they recently sent a letter to family
members, asking for monthly contributions. Until now, her father was the main relative
who had pitched in.
The latest request was a mass mailing of 120 letters.
“All I know is, I don’t want to live like this. We’ve
had to buy
groceries with a credit card,” Christa said recently as she
sat in her living room holding a letter in one hand and wiping tears with the
other.
“My child’s future is at stake,” Christa says. “I just can’t
put a price tag on that right now.”
Chris and Christa Tickle see a little boy they believe
will have a better life if they can endure the tough times.
“His last evaluation, they basically said this child has
no symptoms of autism,” Christa said. “Our goal is for him to have a normal,
functioning life.”
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* * *
Autistic Kids Get School Outside Philly
[By Kelly Bothum Of The Patriot-News. Thanks to Elizabeth
Miller.] http://www.pennlive.com/news/patriotnews/east/index.ssf?/xml/story.ssf/html_
standard.xsl?/base/news/1010485818542355.xml <-- address ends here.
Parents of children with autism face difficult choices
when it comes to their education.
They can enroll them in their neighborhood public school
and begin the maze of individualized education plans and special education
classes.
If they don’t mind driving to the suburbs of Philadelphia,
they may enroll their children in a private school that handles children with
autism. Or they can teach them at home.
Beginning in February, these parents will have another
option. The Vista School, a private school geared toward educating children
with autism, will open in Derry Twp. It is the first of its kind in the area.
The school is the result of a group effort by local
parents of autistic children to find an education alternative specially geared
to their situation.
“The prevalence of autism has increased, or else the
diagnosis has increased dramatically, and the public schools are just not
equipped for it,” said David Fine of Camp Hill, father of a 7-year-old boy with
autism and one of the parents involved in the creation of the Vista School. “What
we wanted was the creation of a school dedicated for them in their best interest.”
There are 17 state-approved private schools that serve
children with autism, said Jeff McCloud, state Department of Education
spokesman. Most are near Philadelphia or Pittsburgh.
Mike Jarman, father of twin boys with autism, said the
school—which will open in the Granada Building—shows what can be accomplished
when people with a common cause unite. The school has been in the works for
21/2 years, with the biggest push coming in the last year.
Jarman, an attorney, started working on the idea for the
school because he said he was concerned about the disconnect between what
children with autism were taught at school and at home. He and other parents
were interested in creating an integrated home and school plan, something they didn’t
think they could find anywhere in the area.
“I didn’t want to have this enormous transition,” he
said.
The school, which will open with about seven pupils
ranging in age
from 6 to 8, will use a rigorous, intensive method of
therapy known as applied behavioral analysis. ABA, as it is known, is a highly
structured program that teaches children with autism by breaking lessons into
small activities. Children are praised for giving the proper response while inappropriate
answers and actions are not reinforced.
One teacher and two classroom aides will be in the
classroom, so there will be one adult for every two children.
Fine, also an attorney, said this kind of school can
greatly improve children with autism by giving them the skills they need to
adjust. He’s seen it in his 7-year-old son, Kenny, who attends Devereux Cares,
an education program for young children with autism in Downingtown.
It’s about an 80-mile commute one-way from the family’s
home in Camp Hill, but the change in Kenny makes the drive worthwhile, Fine
said. Although his son won’t start at
the Vista School when it opens next month, Fine said he’s hopeful he will be
there one day.
The group has secured a private-school license from the
Pennsylvania Department of Education. It hired a consultant and crafted a
curriculum using the ABA method.
Unlike state-approved private schools that receive payment
from the school districts and the state, Vista School is not getting money from
either source.
Parents are paying the cost of tuition—about $60,000 a
year—but they hope to get that money back through due-process hearings with the
school districts, said Jarman, adding that some parents are adding a mortgage
to their house to be able to pay for the new school.
Fine said the goal is to have parents pay nothing for the
school because of contributions from school district, private donors and
grants. Next year, the school aims to
have 20 children, which also would lower the cost of tuition.
Jarman’s son, Patrick, who has been taught at home until
now, will attend Vista next month. His other son will stay at Hershey
Elementary, where he’s been doing well. Jarman’s hoping the same will happen
with Patrick at Vista.
“Our region needs a resource like this specializing in
taking care of these kids,” he said. “We’re willing to make that happen.”
Kelly Bothum may be reached at 255-8440 or kbothum@patriot-news.com.
Copyright 2002 The Patriot-News.
* * *
Unlocking Autism Plans Fundraisers in 18 Cities Nationwide
for Rally
They are looking for volunteer coodinators for 9 of them
Unlocking Autism is coordinating a fundraiser that will
take place on April 18th, 2002 in eighteen cities nationwide. We are currently seeking coordinators for
events in the following cities. If you
are interested in participating, please write Shelley Reynolds at Keys2UA@aol.com. We are hoping to have coordinators in place
by January 25, 2002.
Funds raised from this event will go directly to
financially supporting the rally and the Open Your Eyes project. Most details are in place so fundraising
experience is not necessary - we will walk you through all the steps - we just
need someone with energy, enthusiasm and dedication in the following cities:
Washington, DC
Memphis, TN
Austin, TX
Houston, TX
San Antonio, TX
Denver, CO
San Jose, CA
San Francisco, CA
AND...Sacramento, CA
* * *
FEAT Calendar of Events - Mid-Month Update, (*) Denotes
any corrections made.
** DEADLINE for FEBRUARY Update is January 25: EVENTS@FEAT.org
**
See Calendar Guidelines For Submissions at end of
this posting
>> File Attachments will NOT be opened.
<<
·
FEAT-Houston Meeting
Understanding data:
What is it? How do we get it?
What do we do with it?
How important is it?
January 10, 2002
Houston, TX harris
County MHMRA Autism Day Program site
www.feathouston.org tsloan@flex.net
Implications of Current Research for Behavior Management
in Autism Polly Yarnall, M.Ed.
January 17, 2002
St. Paul, MN
mpowell@goldengate.net 651-647-1083
Autism Spectrum Disorder Conference
January 18-19, 2002
Long Beach, CA Long
Beach Hilton
www.autismpartnership.com 562-0431-9293 x187
Pam Lorzadeh will speak on best using your IEP.
Eric & Stephanie Roan will speak on working with ECI. Pam Fearing will work on forming a positive
working relationship with your child’s teacher.
Marvin Adams, Attorney, will be the Keynote Speaker on “Preparing
for your ARD”.
January 19, 2002
Colleyville, TX
Healthy Approach Market
www.featnt.org Kat1216@aol.com 817-399-9100
·
Tri-State CAN first organizational meeting!!
The event is an introduction to the new chapter and will
allow parents and professionals an opportunity to take a more active role in
the autism community.
New Chapter President, Geoffrey Dubrowsky will present the
vision of what CAN expects from this new chapter.
January 30, 2002
tristate@cureautismnow.org 888-879-CURE
·
20th Annual Conference: Issues in Autism
Keynote presentation, exhibits, 50 workshops...
Atlantic City, NJ
Atlantic City Convention Center
information@njcosac.org www.njcosac.org 609-883-8100
* * *
Legal Research Help Or Adoption Wanted: My son has been in
captivity for almost a year. I need help with legal research so I can hand the
answers to my lawyer who doesn’t represent me properly. By captivity I mean in
foster care. I am a single mother in NJ that couldn’t get help with her son’s lunches
at his special school so I stopped sending him there and lost custody and
although I completed all the requirements that social services asked me to they refuse to return my son to my care. I
need legal help.
Seeking physician in
Southeastern Michigan knowledgeable in diagnosing/supervising chelation of
heavy metal toxicity and advising re supplements. Please contact Hirzram@aol.com.
Looking for families in Kansas whose child is receiving ABA
therapy from
their school system. Looking for families in Kansas who are
fighting their
school system to get appropriate services for their child
who is diagnosed
as being in the autism spectrum. Alone is western Kansas
trying to put
services together for pdd kids
that I case manage.faykile@hotmail.com
Communication Matters is proud to offer The Listening
Program, an auditory
re-training and balancing program for individuals ages 3
years and up. Must
tolerate wearing headphones,
program completed in home. contact
Mindy Newhouse, M.S. CCC-SLP at CommMatters@aol.com for info.
I just want to thank all of you
who helped me with my senior project on autism. I passed with Honors. Unfortunately my computer crashed and I’ve lost
all of your addresses. I’m sorry that I
was not able to thank all of you personally. I can be reached at lisakgil@pacbell.net
for those of you who want to contact me.
Our son was diagnosed 1 year ago. We had a strange occurence
last week. He
came down with coxsackie( hand foot and mouth disease).
While he was ill, he
appeared to be quite normal in behavior and speech, far from
his normal
autistic behaviors. When he recouped, he reverted back to
the abnormal son
we have gotten accustomed to. Has anyone ever experienced
this? Peter Scala
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