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					Transitions: Smoothing the path for autistic toddlers –
By: Lisandra I. Billings
Originally published June 5, 2007 in the Daily Hampshire Gazette
www.dailyhampshiregazette.com



At first they thought that their 2-year-old son was just slow to learn and to speak. But soon Dan and
Gina Hodovanec of Feeding Hills learned his problems were more severe.

Once they enrolled him in an early-intervention program in Westfield, they were told that many of his
characteristics were similar to those of children with autism.

"He used to pace, he would follow horizontal lines on a wall," said Gina Hodovanec. "One of the first
things the early-intervention people noticed was his high tolerance for pain. And I didn't really pick it
up, I just thought that he was a rough-and-tumble kid."

Sure enough, the Hodovanecs' family physician diagnosed Sam as being on the autism spectrum. That
means he has a brain disorder that, in varying degrees, affects an individual's ability to communicate,
relate to the environment and learn and think in typical ways.

The diagnosis made Sam eligible for services provided by REACH, a program offered by the state
Department of Public Health. He saw an autism coordinator three days a week and occupational and
speech therapists each once a week, all one-on-one and in his home.

"REACH services were great, they were phenomenal," said Gina Hodovanec.

But then Sam turned three, making him ineligible for REACH.

"When he turned that certain age and the Agawam school system took over, that was a little scary," said
Dan Hodovanec. "All of these people were here helping him out, and then we're losing [them] and
relying on a whole different set of people."

Though Sam's transition went well, the Hodovanecs say that being unable to directly observe their son's
academic and social progress was difficult. When REACH therapists are in the home, "You get to see
everything that he's learning," says Gina Hodovanec, "and you get to reapply all the stuff because you're
seeing it as a parent. That's the one thing that I miss."

'Dramatic' change

The Hodovanecs' worries are common, says Anne Morehouse, who coordinates the Autism Specialty
Services Program in the Northampton REACH office. The transition from early intervention to
preschool can be a tough one for parents who are often unprepared and uneducated about the rights of
their child, she says. "It's a pretty dramatic transition because early-intervention services are all home-
based and school services are mostly school-based," she said.

As a result, REACH has attempted to make this transition smoother through direct participation in the
process, says Morehouse, as well as through workshops aimed at educating families.
The Hodovanecs say they appreciated the help. "They came to the I.E.P. [Individualized Educational
Plan] meeting," said Gina, "which was wonderful, because you just don't know what to expect as a
parent. You can try to prepare as much as you can, but if you don't know about something, how can you
ask for it?"

Schools try to do their part to help as well, says Janet Ryan, the early education program coordinator in
the Amherst/Pelham school district. She notes that when a child outgrows REACH services, the school
staff meets with parents and REACH early-intervention coordinators to set up the child's program.

"We have speech and language therapists that work with kids," she said. "We have occupational
therapists, physical therapists, autism specialists and we have our teachers, who are early childhood
special education teachers."

Ryan says that though each child's program is individualized, most children diagnosed on the autism
spectrum will enter an integrated classroom and will spend part of their day there and part participating
in autism services.

"Generally we do things like one-on-one work with the child, or we may do facilitated play dates," she
said. "We invite one or two children from that child's class to stay for the specialty services and we do
some small-group programming because a lot of kids on the autism spectrum are working on social
skills."

Gaps in assistance

Such preparation is welcomed by families. Like the Hodovanecs, Chris and April Pearce of Chesterfield
say REACH and their school system helped pave the way for their son, Caleb. They say they know,
however, that that is not always the case.

"We've definitely heard horror stories about public schools in bigger cities where they have to fight ...
but get barely anything," said April Pearce. "It's kind of sad, given that there are all these laws and
regulations out there."

Jason Litto, an autism specialist at the Community Resource Center for Autism, a nonprofit organization
in Easthampton, says he has found that schools don't always tell parents about the services their children
are entitled to. As a result, some youngsters slip through the cracks. The quality of school programs
ranges widely, he says. One group that he thinks often gets overlooked are children with Asperger's
syndrome, who are on the high end of the autism spectrum. They often get As because they have at least
normal intelligence and often above-average intelligence, he says. "The schools are saying, they're doing
fine, they don't need supports, and yet there are major social challenges that are going to greatly impact
them and schools are often not addressing those things," Litto said.

Social and recreational interactions in school can be frustrating for the special needs child, agrees Carrie
McGee, who along with a group of others has formed a recreational program in Hadley for children and
teens of all abilities. McGee, whose son has a developmental disorder known as Williams syndrome,
says there's a gap in the school system that leaves children with special needs depending too much on
adults.

"The schools often will provide, for example, a one-on-one for a child who's in a large classroom," she
said. "But in that dynamic there still isn't direct teaching and a direct opportunity to practice the skills
that are needed for a child to function in that group." The result, she says, is that the special needs child
often ends up interacting with peers through an adult.

McGee said her organization, Whole Children, provides opportunities for children to socialize directly
with other youngsters. "They want to do what the other kids are doing, like soccer and gymnastics," she
said, "but they still need more therapy, they still need more help. They can't just enter into the game
because they need to be pretaught. What are the rules of kickball? How do I bounce a ball? All those
little things that maybe they don't just pick up."

At Whole Children, classes are small, so that each child can get instruction in the basics of activity as he
or she needs it, says McGee.

Supporting each other

April Pearce said that though her son's transition into the public school system is essentially complete,
integration will always be a work in progress. In the meantime, she says, the workshops REACH has
offered have been helpful. A recently completed series offered sessions on such topics as special
education laws, resources, tips for successful community outings and raising children with special needs.

Morehouse said that an evaluation will be done on the workshops and if families indicate that they found
them helpful, REACH will run another series next year.

"Some of it's stuff that you already know but getting out and talking to other parents is always helpful,"
said Pearce. She said it is also worthwhile to get together and remind each other that it's the parents who
ultimately know what's best for their child.

"There are definitely times when you don't see eye to eye with your service providers," she said. "But on
the whole, it comes down to the fact that it's your kid and what you say they're going to take into
account and try to work around that."

				
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