April
1 , 2010
by
Jennifer Bixler and John Bonifield
(CNN)
-- Like many parents, Shannon Kinninger spends a lot of time
chauffeuring her children around town.
"We
are always on the go," says Kinninger.
On
Mondays, Kinninger takes her son Justin to gymnastics. Every
week, the Fayetteville, Georgia, fourth-grader trains one-on-one
with his coach, Rob Chontos.
"I
like the balance beam," says Justin, 9.
Chontos
encourages Justin to stretch his lower back muscles and build
his upper body strength. For Justin, gymnastics is not only
fun, it's also therapeutic.
The
Empowered Patient first introduced readers to Justin Kinninger
two years ago. Justin has autism. From his earliest months,
Kinninger believed something was different about her son.
"When
he was supposed to be sitting up, he wasn't sitting up ... when
he was supposed to be rolling over, he wasn't rolling over,"
says Kinninger, a nurse.
The
pediatrician told Kinninger that Justin was just developing
late because he's a boy. But Kinninger knew something wasn't
right. Finally, when he was 4, Justin was diagnosed with autism.
"After
the shock wore off, we had a lot of questions. We wondered where
do we go from here?" says Kinninger.
Like
many parents, Kinninger turned to the Internet for answers.
This week, in honor of World Autism Awareness Day on April 2,
the Empowered Patient has asked experts and parents their thoughts
on the best Web sites for autism information.
Autism
Speaks
Autism
Speaks, an awareness and advocacy organization, just updated
its week-by-week
100-day kit to help families navigate the days following
an autism diagnosis. The kit includes advice on how to build
a team of therapists, keep accurate phone records and adapt
your home to protect your child from his or her uncontrolled
behaviors. Also, Autism Speaks' video
glossary has more than 100 video clips comparing the behavior
of children with autism spectrum disorders with the behavior
of a typical child.
The
Autism Society of America
The
Autism Society of America, an awareness and advocacy organization,
has support groups throughout the United States. To find your
local chapter, click
here. The society has also partnered with AMC Entertainment
to provide children affected by autism the opportunity to watch
hit movies in a sensory-friendly environment, with the lights
turned up and the sound turned down. To find a list of upcoming
films in your city, click
here.
The
IAN Project
The
Interactive Autism Network boasts the largest online study
in the U.S., connecting researchers with people and families
effected by autism. Its goal is to help further research and
improve social services for people with autism. The site has
a variety of resources, including a glossary
of terms related to autism.
Simons
Foundation Autism Research Foundation
Simons
Foundation Autism Research Foundation investigates the causes
of autism. The site is geared largely toward researchers and
scientists, but it contains a regularly updated
blog that parents can monitor to learn about the latest
news and commentary on autism research.
First
Signs
If
you live near a major research university, you can find out
whether anyone is looking for children with autism for research
studies. Sometimes, these universities will provide care for
your child as part of the study. First
Signs, an awareness organization, has a
list of researchers currently seeking study participants.
The
U.S. Department of Education
When
your child enters public school, he or she has rights under
federal and state laws. The U.S.
Department of Education has information about federal laws
and state
laws. You and your school district will come up with an
Individual Education Plan. School districts often have a Special
Education Parent Teacher Association. Parents there can often
give good advice on how to work with the school district.
The
National Dissemination Center for Children with Disabilities
Any
child younger than 3 with a developmental delay is eligible
to receive services through Early Intervention, a government-mandated
program that provides services to eligible children. Services
are free and vary from state to state, but they may include
speech and language instruction and occupational and physical
therapy. To learn how to apply for Early Intervention, click
on this state-by-state
directory from the National
Dissemination Center for Children with Disabilities and
scroll down.
Wrightslaw
Yellow Pages for Kids With Disabilities
Early
intervention is invaluable because it links parents to services
in the community, but Lisa Goring, mother of a child with autism
and director of family services at Autism Speaks, warns that
parents may also have to search on their own, since it can be
hard to find services without a long waiting list. "There
just aren't enough service providers for the kids who need them,"
Goring says. To find services on your own, wrightslaw.com,
which offers information about special education law and advocacy,
has a Yellow Pages
for Kids that lists providers.
Jobs
4 Autism
Jobs4autism
is an online forum to help people with autism find employment.
Employers can post job openings, and users can post stories
of successful and unsuccessful job experiences.
World
Autism Awareness Day
To
find out how autism organizations throughout the world are celebrating
World Autism Awareness Day, check out this year's list
of events. The site also includes materials for all parents
with children about the eight
red flags that may indicate your child has autism and should
be screened by doctors.
The
bottom line, says Kinninger, is to do your homework. What works
for one child may not work for another.
Kinninger
says that by getting the facts on treatment and what works,
it will save time and money. "Knowledge is power."
"10 Sites Worth Checking Out if Your Child Has Autism" - CNN
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